International Rare Diseases Research Consortium (IRDiRC)

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The International Rare Diseases Research Consortium (IRDiRC) is a global collaborative initiative launched in 2011 by the European Commission and the US National Institutes of Health to tackle rare diseases through research and accomplish the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention."> <meta property="og:title" content="International Rare Diseases Research Consortium (IRDiRC) | LinkedIn"> <meta property="og:description" content="International Rare Diseases Research Consortium (IRDiRC) | 1 408 abonnés sur LinkedIn. The International Rare Diseases Research Consortium (IRDiRC) is a global collaborative initiative launched in 2011 by the European Commission and the US National Institutes of Health to tackle rare diseases through research and accomplish the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention."> <meta property="og:image" content="https://media.licdn.com/dms/image/v2/D4E0BAQHJB9QKfwWvuA/company-logo_200_200/company-logo_200_200/0/1707478761244?e=2147483647&v=beta&t=yIIkKchOddqvaTJcEYJUv84RaON5GJT2RoJhMCebJ4I"> <meta property="og:type" content="article"> <meta property="og:url" content="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc"> <meta name="twitter:card" content="summary"> <meta name="twitter:site" content="@linkedin"> <meta name="twitter:title" content="International Rare Diseases Research Consortium (IRDiRC) | LinkedIn"> <meta name="twitter:description" content="International Rare Diseases Research Consortium (IRDiRC) | 1 408 abonnés sur LinkedIn. The International Rare Diseases Research Consortium (IRDiRC) is a global collaborative initiative launched in 2011 by the European Commission and the US National Institutes of Health to tackle rare diseases through research and accomplish the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention."> <meta name="twitter:image" content="https://media.licdn.com/dms/image/v2/D4E0BAQHJB9QKfwWvuA/company-logo_200_200/company-logo_200_200/0/1707478761244?e=2147483647&v=beta&t=yIIkKchOddqvaTJcEYJUv84RaON5GJT2RoJhMCebJ4I"> <meta name="clientSideIngraphs" content="1" data-gauge-metric-endpoint="/organization-guest/api/ingraphs/gauge" data-counter-metric-endpoint="/organization-guest/api/ingraphs/counter"> <link rel="stylesheet" href="https://static.licdn.com/aero-v1/sc/h/7ukb4eczuhlv7ppbf8zrzt77c"> <script type="application/ld+json"> 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Consortium (IRDiRC)"> </div> <div class="top-card-layout__entity-info-container flex flex-wrap papabear:flex-nowrap"> <div class="top-card-layout__entity-info flex-grow flex-shrink-0 basis-0 babybear:flex-none babybear:w-full babybear:flex-none babybear:w-full"> <h1 class="top-card-layout__title font-sans text-lg papabear:text-xl font-bold leading-open text-color-text mb-0"> International Rare Diseases Research Consortium (IRDiRC) </h1> <h2 class="top-card-layout__headline break-words font-sans text-md leading-open text-color-text"> Santé publique </h2> <h3 class="top-card-layout__first-subline font-sans text-md leading-open text-color-text-low-emphasis"> Paris, Île-de-France <span class="before:middot"></span> 1 408 abonnés </h3>  <div class="top-card-layout__cta-container flex flex-wrap mt-0.5 papabear:mt-0 ml-[-12px]">  <a class="top-card-layout__cta mt-2 ml-1.5 h-auto babybear:flex-auto top-card-layout__cta--secondary btn-md btn-secondary" 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living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention.</p> <dl class="mt-6"> <div class="mb-2 flex papabear:mr-3 mamabear:mr-3 babybear:flex-wrap" data-test-id="about-us__website"> <dt class="font-sans text-md font-bold text-color-text break-words w-40 papabear:flex-shrink-0 papabear:mr-3 mamabear:flex-shrink-0 mamabear:mr-3 babybear:mb-1"> Site web </dt> <dd class="font-sans text-md text-color-text break-words overflow-hidden"> <a class="link-no-visited-state hover:no-underline" data-tracking-control-name="about_website" href="https://www.linkedin.com/redir/redirect?url=https%3A%2F%2Firdirc%2Eorg%2F&urlhash=qi2d&trk=about_website" target="_blank" rel="noopener" data-tracking-will-navigate aria-describedby="websiteLinkDescription"> https://irdirc.org/ <icon class="align-middle" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/49229g4q0jsla5l1xojq1wob9" aria-hidden="true"></icon> </a> <p class="hidden" id="websiteLinkDescription">Lien externe pour International Rare Diseases Research Consortium (IRDiRC)</p> </dd> </div> <div class="mb-2 flex papabear:mr-3 mamabear:mr-3 babybear:flex-wrap" data-test-id="about-us__industry"> <dt class="font-sans text-md font-bold text-color-text break-words w-40 papabear:flex-shrink-0 papabear:mr-3 mamabear:flex-shrink-0 mamabear:mr-3 babybear:mb-1"> Secteur </dt> <dd class="font-sans text-md text-color-text break-words overflow-hidden"> Santé publique </dd> </div> <div class="mb-2 flex papabear:mr-3 mamabear:mr-3 babybear:flex-wrap" data-test-id="about-us__size"> <dt class="font-sans text-md font-bold text-color-text break-words w-40 papabear:flex-shrink-0 papabear:mr-3 mamabear:flex-shrink-0 mamabear:mr-3 babybear:mb-1"> Taille de l’entreprise </dt> <dd class="font-sans text-md text-color-text break-words overflow-hidden"> 51-200 employés </dd> </div> <div class="mb-2 flex papabear:mr-3 mamabear:mr-3 babybear:flex-wrap" data-test-id="about-us__headquarters"> <dt class="font-sans text-md font-bold text-color-text break-words w-40 papabear:flex-shrink-0 papabear:mr-3 mamabear:flex-shrink-0 mamabear:mr-3 babybear:mb-1"> Siège social </dt> <dd class="font-sans text-md text-color-text break-words overflow-hidden"> Paris, Île-de-France </dd> </div> <div class="mb-2 flex papabear:mr-3 mamabear:mr-3 babybear:flex-wrap" data-test-id="about-us__organizationType"> <dt class="font-sans text-md font-bold text-color-text break-words w-40 papabear:flex-shrink-0 papabear:mr-3 mamabear:flex-shrink-0 mamabear:mr-3 babybear:mb-1"> Type </dt> <dd class="font-sans text-md text-color-text break-words overflow-hidden"> Administration publique </dd> </div> <div class="mb-2 flex papabear:mr-3 mamabear:mr-3 babybear:flex-wrap" data-test-id="about-us__foundedOn"> <dt class="font-sans text-md font-bold text-color-text break-words w-40 papabear:flex-shrink-0 papabear:mr-3 mamabear:flex-shrink-0 mamabear:mr-3 babybear:mb-1"> Fondée en </dt> <dd class="font-sans text-md text-color-text break-words overflow-hidden"> 2011 </dd> </div>  </dl> </div> </section>  <section class="core-section-container core-section-container--with-border border-b-1 border-solid border-color-border-faint py-4 locations">  <h2 class="core-section-container__title section-title"> Lieux </h2>  <div class="core-section-container__content break-words"> <ul class="show-more-less__list show-more-less__list--no-hidden-elems" data-impression-id="org-locations_show-more-less"> <li class="mb-3 papabear:w-50% papabear:odd:mr-2 papabear:odd:w-[calc(50%-16px)]"> <span class="tag-sm tag-enabled"> Principal </span> <div id="address-0"> <p> 96, Rue Didot </p>  <p> 75014 Paris, Île-de-France, FR </p> </div> <a class="link-no-visited-state hover:no-underline" data-tracking-control-name="org-locations_url" href="https://www.bing.com/maps?where=96%2C+Rue+Didot+Paris+75014+%C3%8Ele-de-France+FR&trk=org-locations_url" target="_blank" rel="noopener" data-tracking-will-navigate aria-describedby="address-0"> Obtenir l’itinéraire <icon class="align-middle" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/49229g4q0jsla5l1xojq1wob9" aria-hidden="true"></icon> </a> </li> </ul> </div> </section> <section class="core-section-container core-section-container--with-border border-b-1 border-solid border-color-border-faint py-4" data-test-id="employees-at">  <h2 class="core-section-container__title section-title"> Employés chez International Rare Diseases Research Consortium (IRDiRC) </h2>  <div class="core-section-container__content break-words"> <ul> <li> <a href="https://ch.linkedin.com/in/thomas-morel-946a03?trk=org-employees" target="_self" data-tracking-control-name="org-employees" data-tracking-will-navigate class="base-card relative w-full hover:no-underline focus:no-underline base-card--link base-main-card flex flex-wrap py-2 pr-2 babybear:pr-0 base-main-card--link ">  <img class="inline-block relative rounded-[50%] w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/C4D03AQGlzE4t0yl8fg/profile-displayphoto-shrink_100_100/profile-displayphoto-shrink_100_100/0/1516265650625?e=2147483647&v=beta&t=KGlFSMnfCIUclI2sbsFI2FlPJzP9a8Oi3nGPVKXcatc" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/9c8pery4andzj6ohjkjp54ma2" alt="Cliquez ici pour voir le profil de Thomas Morel"> <div class="base-main-card__info self-center ml-1 flex-1 relative break-words papabear:min-w-0 mamabear:min-w-0 babybear:w-full ">  <h3 class="base-main-card__title font-sans text-[18px] font-bold text-color-text overflow-hidden "> Thomas Morel  </h3> <h4 class="base-main-card__subtitle body-text text-color-text overflow-hidden "> Global Patient-Centred Outcomes Research & Policy Lead at UCB </h4>   </div>  </a> </li> <li> <a href="https://www.linkedin.com/in/suekahn?trk=org-employees" target="_self" data-tracking-control-name="org-employees" data-tracking-will-navigate class="base-card relative w-full hover:no-underline focus:no-underline base-card--link base-main-card flex flex-wrap py-2 pr-2 babybear:pr-0 base-main-card--link ">  <img class="inline-block relative rounded-[50%] w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4E03AQGoqImQEKBMtw/profile-displayphoto-shrink_100_100/profile-displayphoto-shrink_100_100/0/1674608833543?e=2147483647&v=beta&t=6kBwQ2m0cTvdRRzXPaD0jQHJFgjsiIyQ73uO3f_lwQ4" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/9c8pery4andzj6ohjkjp54ma2" alt="Cliquez ici pour voir le profil de Sue Kahn"> <div class="base-main-card__info self-center ml-1 flex-1 relative break-words papabear:min-w-0 mamabear:min-w-0 babybear:w-full ">  <h3 class="base-main-card__title font-sans text-[18px] font-bold text-color-text overflow-hidden "> Sue Kahn  </h3> <h4 class="base-main-card__subtitle body-text text-color-text overflow-hidden "> Board member | Non-profit Leader | Consultant | Rare Diseases | Patient Advocacy </h4>   </div>  </a> </li> <li> <a href="https://nl.linkedin.com/in/dianakwasthoekstra?trk=org-employees" target="_self" data-tracking-control-name="org-employees" data-tracking-will-navigate class="base-card relative w-full hover:no-underline focus:no-underline base-card--link base-main-card flex flex-wrap py-2 pr-2 babybear:pr-0 base-main-card--link ">  <img class="inline-block relative rounded-[50%] w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4D03AQFnuuDB2BJUOA/profile-displayphoto-shrink_100_100/profile-displayphoto-shrink_100_100/0/1730888482005?e=2147483647&v=beta&t=nmtecXF7gbai0iLq0HKSG6aL1_z22pwvRVDhLfZn_8g" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/9c8pery4andzj6ohjkjp54ma2" alt="Cliquez ici pour voir le profil de Diana Kwast-Hoekstra, MScN. RN."> <div class="base-main-card__info self-center ml-1 flex-1 relative break-words papabear:min-w-0 mamabear:min-w-0 babybear:w-full ">  <h3 class="base-main-card__title font-sans text-[18px] font-bold text-color-text overflow-hidden "> Diana Kwast-Hoekstra, MScN. RN.  </h3> <h4 class="base-main-card__subtitle body-text text-color-text overflow-hidden "> PhD Candidate-Nurse Scientist (UMCG) - International Patientadvocate (VSOP/Eurordis) - IRDiRC-TSC member. EUPATI FELLOW. President of the Board… </h4>   </div>  </a> </li> <li> <a href="https://ca.linkedin.com/in/oxana-iliach-26240017?trk=org-employees" target="_self" data-tracking-control-name="org-employees" data-tracking-will-navigate class="base-card relative w-full hover:no-underline focus:no-underline base-card--link base-main-card flex flex-wrap py-2 pr-2 babybear:pr-0 base-main-card--link ">  <img class="inline-block relative rounded-[50%] w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/C4D03AQHvlXjz-gD5-Q/profile-displayphoto-shrink_100_100/profile-displayphoto-shrink_100_100/0/1516627338484?e=2147483647&v=beta&t=yTaKvR_PntGggO6gZ0ao-M_sHHRrnR-ndNjZ3hM-Ns0" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/9c8pery4andzj6ohjkjp54ma2" alt="Cliquez ici pour voir le profil de Oxana Iliach"> <div class="base-main-card__info self-center ml-1 flex-1 relative break-words papabear:min-w-0 mamabear:min-w-0 babybear:w-full ">  <h3 class="base-main-card__title font-sans text-[18px] font-bold text-color-text overflow-hidden "> Oxana Iliach  </h3> <h4 class="base-main-card__subtitle body-text text-color-text overflow-hidden "> Senior Director, Regulatory Strategy at Certara and Member of Regulatory Science Committee at IRDiRC </h4>   </div>  </a> </li> </ul> <a class="mt-4 inline-block btn-md btn-secondary-emphasis hover:no-underline" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww%2Elinkedin%2Ecom%2Fsearch%2Fresults%2Fpeople%2F%3FfacetCurrentCompany%3D%255B102119719%255D&_l=fr&trk=public_biz_employees-join" data-tracking-control-name="public_biz_employees-join" data-tracking-will-navigate> Voir tous les employés </a> </div> </section> <section class="core-section-container core-section-container--with-border border-b-1 border-solid border-color-border-faint py-4 updates" data-test-id="updates">  <h2 class="core-section-container__title section-title"> Nouvelles </h2>  <div class="core-section-container__content break-words"> <ul class="updates__list"> <li class="mb-1"> <div data-id="entire-feed-card-link" class="relative"> <a class="main-feed-card__overlay-link absolute left-0 top-0 h-full w-full z-1 !border-0" href="https://www.linkedin.com/posts/international-rare-diseases-research-consortium-irdirc_react-why-join-activity-7267094502643789824-eLLt" data-id="main-feed-card__full-link" data-tracking-control-name="organization_guest_main-feed-card__full-link" data-tracking-will-navigate aria-label="Nouvelle 1"> </a> <article class="relative pt-1.5 px-2 pb-0 bg-color-background-container container-lined main-feed-activity-card papabear:max-w-[550px]" data-activity-urn="urn:li:activity:7267094502643789824" data-featured-activity-urn="urn:li:activity:7267094502643789824" data-attributed-urn="urn:li:ugcPost:7267089793656766465" data-id="main-feed-card">  <p class="!text-sm text-color-text mb-1 pb-[10px] border-b-1 border-solid border-color-border-faint main-feed-activity-card__header mx-main-feed-card-no-gutter px-main-feed-card-no-gutter"> <a href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-reaction-header" class="link-styled" data-tracking-control-name="organization_guest_main-feed-card_feed-reaction-header" data-tracking-will-navigate="true" target="_self">International Rare Diseases Research Consortium (IRDiRC)</a> a republié ceci </p> <div class="flex items-center font-sans mb-1" data-test-id="main-feed-activity-card__entity-lockup"> <a href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card_feed-actor-image" class="relative" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4D0BAQHbHoA_QcFy4A/company-logo_100_100/company-logo_100_100/0/1725294108827/erdera_logo?e=2147483647&v=beta&t=78vpKTwRCNymHAhRs8SQ0bBasqxHsrzYwkDEzxJe5JY" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour ERDERA, visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour ERDERA" data-tracking-will-navigate> ERDERA </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 813 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 23 h. <span aria-hidden="true" class="text-color-text-low-emphasis before:middot"></span> <span> Modifié </span> </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div class="collapsible-dropdown flex items-center relative hyphens-auto"> <button class="ellipsis-menu__trigger collapsible-dropdown__button btn-md btn-tertiary cursor-pointer !py-[6px] !px-1 flex items-center rounded-[50%] " aria-expanded="false" aria-label="Ouvrir le menu" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-trigger" tabindex="0"> <icon class="ellipsis-menu__trigger-icon m-0 p-0 centered-icon" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/671xosfpvk4c0kqtyl87hashi"></icon> </button> <ul class="collapsible-dropdown__list hidden container-raised absolute w-auto overflow-y-auto flex-col items-stretch z-1 bottom-auto top-[100%]" role="menu" tabindex="-1"> <li class="ellipsis-menu__item border-t-1 border-solid border-color-border-low-emphasis first-of-type:border-none flex"> <a href="https://www.linkedin.com/uas/login?fromSignIn=true&session_redirect=https%3A%2F%2Ffr.linkedin.com%2Fcompany%2Finternational-rare-diseases-research-consortium-irdirc&trk=organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect&guestReportContentType=POST&_f=guest-reporting" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect" data-tracking-will-navigate data-item-type="semaphore" data-semaphore-content-type="POST" data-semaphore-content-urn="urn:li:activity:7267094502643789824" data-semaphore-tracking-prefix="organization_guest_main-feed-card_ellipsis-menu-semaphore" data-is-logged-in="false" data-modal="semaphore__toggle" class="semaphore__toggle visited:text-color-text-secondary ellipsis-menu__semaphore ellipsis-menu__item-button flex items-center w-full p-1 cursor-pointer font-sans text-sm font-bold link-styled focus:link-styled link:no-underline active:bg-color-background-container-tint focus:bg-color-background-container-tint hover:bg-color-background-container-tint outline-offset-[-2px]">  <icon class="ellipsis-menu__item-icon text-color-text h-[24px] w-[24px] mr-1" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/iq0x9q37wj214o129ai1yjut"> </icon> Signaler ce post </a>  </li>  </ul>  </div> </div> <div class="attributed-text-segment-list__container relative mt-1 mb-1.5 babybear:mt-0 babybear:mb-0.5"> <p class="attributed-text-segment-list__content text-color-text !text-sm whitespace-pre-wrap break-words " dir="ltr" data-test-id="main-feed-activity-card__commentary">Why Attend the 8th RE(ACT) Congress & IRDiRC Conference 2025? 🌍 🌟 Inspiring Research & Policy Discussions Hear from leading experts about cutting-edge research and policy innovations shaping the rare disease landscape. 🌟 Networking & Collaboration Opportunities Connect with researchers, clinicians, policymakers, patients, and advocates to build meaningful partnerships that drive progress. 🌟 Inclusive & Patient-Centred Approach This conference ensures the voice of patients is at the heart of every discussion. 🌟 All-Access Experience From keynote speeches to interactive workshops, panel discussions, and networking sessions—immerse yourself in this full experience. 📅 Key Dates to Remember: Standard Registration: 1 October – 31 December 2024 Late/On-site Registration: From 1 January 2025 Abstract Submission Deadline: 31 December 2024 🚀 Be part of the global movement making a difference for rare disease communities. 🔗 Learn more and register today: <a class="link" href="https://loom.ly/FOgBwLw?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>https://loom.ly/FOgBwLw</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Freact2025&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#REACT2025</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fraredisease&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#RareDisease</a> <a class="link" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>International Rare Diseases Research Consortium (IRDiRC)</a> <a class="link" href="https://fr.linkedin.com/company/eurordis?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>EURORDIS-Rare Diseases Europe</a> <a class="link" href="https://fr.linkedin.com/company/rare-diseases-international?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>RARE DISEASES INTERNATIONAL</a></p>  </div> <iframe class="h-[293px] w-main-feed-card-media" allowfullscreen frameborder="0" data-id="feed-paginated-document-content" data-delayed-url="https://media.licdn.com/embeds/native-document.html" data-native-document-config="{"action":"init","a11y":{"pagination":{"paginationValue":"Page actuelle","paginationLength":"Nbre total de pages"},"sidepanelLeft":{"navButton":"Revenir à la page précédente du document"},"sidepanelRight":{"navButton":"Aller à la page suivante du 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class="main-feed-card__overlay-link absolute left-0 top-0 h-full w-full z-1 !border-0" href="https://www.linkedin.com/posts/international-rare-diseases-research-consortium-irdirc_activity-7264630111549767681-0-SE" data-id="main-feed-card__full-link" data-tracking-control-name="organization_guest_main-feed-card__full-link" data-tracking-will-navigate aria-label="Nouvelle 2"> </a> <article class="relative pt-1.5 px-2 pb-0 bg-color-background-container container-lined main-feed-activity-card papabear:max-w-[550px]" data-activity-urn="urn:li:activity:7264630111549767681" data-featured-activity-urn="urn:li:activity:7264624708736729088" data-attributed-urn="urn:li:share:7264624707415461890" data-id="main-feed-card">  <p class="!text-sm text-color-text mb-1 pb-[10px] border-b-1 border-solid border-color-border-faint main-feed-activity-card__header mx-main-feed-card-no-gutter px-main-feed-card-no-gutter"> <a href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-reaction-header" class="link-styled" data-tracking-control-name="organization_guest_main-feed-card_feed-reaction-header" data-tracking-will-navigate="true" target="_self">International Rare Diseases Research Consortium (IRDiRC)</a> a republié ceci </p> <div class="flex items-center font-sans mb-1" data-test-id="main-feed-activity-card__entity-lockup"> <a href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card_feed-actor-image" class="relative" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4D0BAQHbHoA_QcFy4A/company-logo_100_100/company-logo_100_100/0/1725294108827/erdera_logo?e=2147483647&v=beta&t=78vpKTwRCNymHAhRs8SQ0bBasqxHsrzYwkDEzxJe5JY" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour ERDERA, visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour ERDERA" data-tracking-will-navigate> ERDERA </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 813 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 1 sem.  </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div 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href="https://www.linkedin.com/uas/login?fromSignIn=true&session_redirect=https%3A%2F%2Ffr.linkedin.com%2Fcompany%2Finternational-rare-diseases-research-consortium-irdirc&trk=organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect&guestReportContentType=POST&_f=guest-reporting" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect" data-tracking-will-navigate data-item-type="semaphore" data-semaphore-content-type="POST" data-semaphore-content-urn="urn:li:activity:7264630111549767681" data-semaphore-tracking-prefix="organization_guest_main-feed-card_ellipsis-menu-semaphore" data-is-logged-in="false" data-modal="semaphore__toggle" class="semaphore__toggle visited:text-color-text-secondary ellipsis-menu__semaphore ellipsis-menu__item-button flex items-center w-full p-1 cursor-pointer font-sans text-sm font-bold link-styled focus:link-styled link:no-underline active:bg-color-background-container-tint 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data-tracking-will-navigate>BLACKSWAN Foundation</a> and the <a class="link" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>International Rare Diseases Research Consortium (IRDiRC)</a>. The event will bring together top researchers, clinicians, and advocates from around the globe for a transformative experience in Brussels from March 5-7, 2025. 🔬 Why Attend? 🔹Inspiring Research & Policy Discussions 🔹Networking & Collaboration opportunities 🔹Inclusive & Patient-Centred approach 🔹All-Access Experience 📅 Key Dates: - Standard Registration: October 1 – December 31, 2024 - Late/On-site Registration: Starting January 1, 2025 - Abstract Submission Deadline: December 31, 2024 🚀 Don't miss out on this pivotal gathering! Register now to secure your spot and be part of the global movement advancing research in rare diseases. 🌐 <a class="link" href="https://loom.ly/FOgBwLw?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>https://loom.ly/FOgBwLw</a> See you there! <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Freactcongress2025&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#REACTCongress2025</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Frarediseases&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" 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data-delayed-url="https://media.licdn.com/dms/image/v2/D4E0BAQHJB9QKfwWvuA/company-logo_100_100/company-logo_100_100/0/1707478761244?e=2147483647&v=beta&t=8B7EcU6uVcdpq2oQiuKbI1FOfrdWNoqNimDvyUdiCoQ" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour International Rare Diseases Research Consortium (IRDiRC), visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour International Rare Diseases Research Consortium (IRDiRC)" data-tracking-will-navigate> International Rare Diseases Research Consortium (IRDiRC) </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 408 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 1 sem.  </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div class="collapsible-dropdown flex items-center relative hyphens-auto"> <button class="ellipsis-menu__trigger collapsible-dropdown__button btn-md btn-tertiary cursor-pointer !py-[6px] !px-1 flex items-center rounded-[50%] " aria-expanded="false" aria-label="Ouvrir le menu" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-trigger" tabindex="0"> <icon class="ellipsis-menu__trigger-icon m-0 p-0 centered-icon" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/671xosfpvk4c0kqtyl87hashi"></icon> </button> <ul class="collapsible-dropdown__list hidden container-raised absolute w-auto 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ellipsis-menu__semaphore ellipsis-menu__item-button flex items-center w-full p-1 cursor-pointer font-sans text-sm font-bold link-styled focus:link-styled link:no-underline active:bg-color-background-container-tint focus:bg-color-background-container-tint hover:bg-color-background-container-tint outline-offset-[-2px]">  <icon class="ellipsis-menu__item-icon text-color-text h-[24px] w-[24px] mr-1" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/iq0x9q37wj214o129ai1yjut"> </icon> Signaler ce post </a>  </li>  </ul>  </div> </div> <div class="attributed-text-segment-list__container relative mt-1 mb-1.5 babybear:mt-0 babybear:mb-0.5"> <p class="attributed-text-segment-list__content text-color-text !text-sm whitespace-pre-wrap break-words " dir="ltr" data-test-id="main-feed-activity-card__commentary">🗓️ Just one week left to apply for DSC membership! The Diagnostics Scientific Committee is currently seeking to expand its membership by welcoming 5 new rare disease diagnostic experts for a one-time-renewable 3-year term on the DSC. Prioritization will be given to applicants with one or more of the following: 1. Represents a Low- or Middle-Income rare disease population or region, 2. Represents the following geographic regions not covered by continuing members: South Asia, Africa, Australia, China, East Asia, and/or 3. Has expertise in one or more of the following fields: use of artificial intelligence approaches to diagnosis, language translation of diagnostic reference tools and/or emerging diagnostic technologies. 📩 To apply, please send your resume, bio-sketch, and letter of motivation to <a class="link" href="mailto:scientific.secretariat@irdirc.org?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>scientific.secretariat@irdirc.org</a> before 25 November 2024.</p>  </div> <ul class="grid grid-cols-6 grid-rows-[60%_40%] w-main-feed-card-media feed-images-content list-none pl-0 " data-test-id="feed-images-content"> <li class="bg-color-background-container-tint text-[0px] col-span-full row-span-full " data-test-id="feed-images-content__list-item" data-position="0"> <img class="lazy-load w-full object-cover object-center h-full babybear:max-h-[400px]" 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data-featured-activity-urn="urn:li:activity:7264220191272681473" data-attributed-urn="urn:li:share:7264220187577470976" data-id="main-feed-card">  <p class="!text-sm text-color-text mb-1 pb-[10px] border-b-1 border-solid border-color-border-faint main-feed-activity-card__header mx-main-feed-card-no-gutter px-main-feed-card-no-gutter"> <a href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-reaction-header" class="link-styled" data-tracking-control-name="organization_guest_main-feed-card_feed-reaction-header" data-tracking-will-navigate="true" target="_self">International Rare Diseases Research Consortium (IRDiRC)</a> a republié ceci </p> <div class="flex items-center font-sans mb-1" data-test-id="main-feed-activity-card__entity-lockup"> <a href="https://it.linkedin.com/company/italfarmaco-s.p.a.?trk=organization_guest_main-feed-card_feed-actor-image" class="relative" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/C4E0BAQGsnkkC73NlIA/company-logo_100_100/company-logo_100_100/0/1655297550765/italfarmaco_spa_logo?e=2147483647&v=beta&t=6OTQEYbNIW2L2l4o9urlaL0Gi1oniwOja0L9i8V5mAA" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour ITALFARMACO S.P.A., visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://it.linkedin.com/company/italfarmaco-s.p.a.?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour ITALFARMACO S.P.A." data-tracking-will-navigate> ITALFARMACO S.P.A. </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  26 448 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 1 sem.  </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div class="collapsible-dropdown flex items-center relative hyphens-auto"> <button class="ellipsis-menu__trigger collapsible-dropdown__button btn-md btn-tertiary cursor-pointer !py-[6px] !px-1 flex items-center rounded-[50%] " aria-expanded="false" aria-label="Ouvrir le menu" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-trigger" tabindex="0"> <icon class="ellipsis-menu__trigger-icon m-0 p-0 centered-icon" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/671xosfpvk4c0kqtyl87hashi"></icon> </button> <ul class="collapsible-dropdown__list hidden container-raised absolute w-auto overflow-y-auto flex-col items-stretch z-1 bottom-auto top-[100%]" role="menu" tabindex="-1"> <li class="ellipsis-menu__item border-t-1 border-solid border-color-border-low-emphasis first-of-type:border-none flex"> <a href="https://www.linkedin.com/uas/login?fromSignIn=true&session_redirect=https%3A%2F%2Ffr.linkedin.com%2Fcompany%2Finternational-rare-diseases-research-consortium-irdirc&trk=organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect&guestReportContentType=POST&_f=guest-reporting" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect" data-tracking-will-navigate data-item-type="semaphore" data-semaphore-content-type="POST" data-semaphore-content-urn="urn:li:activity:7264221454173454339" data-semaphore-tracking-prefix="organization_guest_main-feed-card_ellipsis-menu-semaphore" data-is-logged-in="false" data-modal="semaphore__toggle" class="semaphore__toggle visited:text-color-text-secondary ellipsis-menu__semaphore ellipsis-menu__item-button flex items-center w-full p-1 cursor-pointer font-sans text-sm font-bold link-styled focus:link-styled link:no-underline active:bg-color-background-container-tint focus:bg-color-background-container-tint hover:bg-color-background-container-tint outline-offset-[-2px]">  <icon class="ellipsis-menu__item-icon text-color-text h-[24px] w-[24px] mr-1" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/iq0x9q37wj214o129ai1yjut"> </icon> Signaler ce post </a>  </li>  </ul>  </div> </div> <div class="attributed-text-segment-list__container relative mt-1 mb-1.5 babybear:mt-0 babybear:mb-0.5"> <p class="attributed-text-segment-list__content text-color-text !text-sm whitespace-pre-wrap break-words " dir="ltr" data-test-id="main-feed-activity-card__commentary">National and international clinical research networks (CRNs) are crucial to developing and delivering new therapies for rare disease patients. To better understand how to optimize the impact of CRNs for patient groups worldwide, the International Rare Diseases Research Consortium <a class="link" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>International Rare Diseases Research Consortium (IRDiRC)</a> and the European Joint Programme on Rare Diseases (EJP RD) discussed opportunities and key considerations for CRNs in 2022. Their conclusions are now published in an article in Frontiers in Medicine, which is co-authored by our team member <a class="link" href="https://fr.linkedin.com/in/samantha-parker-4946946?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>Samantha Parker</a>. The publication “Fostering the international interoperability of clinical research networks to tackle undiagnosed and under-researched rare diseases” finds that CRNs can serve as a cornerstone for patient groups by enabling them to connect with clinicians around the world. To help deliver a more resilient global research system, a greater global linkage between national CRNs is crucial. Ways to overcome current hurdles include standardized data collection and sharing, as well as connecting expert knowledge and patient input, the paper concludes. At Italfarmaco, we are committed to addressing the unmet needs of the rare disease community and are thus engaged in fostering clinical research networks to ultimately provide solutions that have a real impact on the lives of patients and their families. <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Frarediseases&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#RareDiseases</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fpatientadvocacy&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#PatientAdvocacy</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Firdirc&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#IRDiRC</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fcrn&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#CRN</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fduchenne&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#Duchenne</a> <a class="link" 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</a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 408 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 1 sem.  </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div class="collapsible-dropdown flex items-center relative hyphens-auto"> <button class="ellipsis-menu__trigger collapsible-dropdown__button btn-md btn-tertiary cursor-pointer !py-[6px] !px-1 flex items-center rounded-[50%] " aria-expanded="false" aria-label="Ouvrir le menu" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-trigger" tabindex="0"> <icon class="ellipsis-menu__trigger-icon m-0 p-0 centered-icon" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/671xosfpvk4c0kqtyl87hashi"></icon> </button> <ul class="collapsible-dropdown__list hidden container-raised absolute w-auto 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This article highlights key considerations for developing successful collaborative clinical research networks (CRNs) for rare diseases across the globe. It discusses opportunities to raise the international dimension of CRNs and to contribute to more accurate and faster diagnosis and treatment. 📰 Read the full article here: <a class="link" href="https://lnkd.in/epaRpNGR?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>https://lnkd.in/epaRpNGR</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fpublication&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#publication</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fclinicalresearchnetworks&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" 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class="main-feed-card__overlay-link absolute left-0 top-0 h-full w-full z-1 !border-0" href="https://www.linkedin.com/posts/international-rare-diseases-research-consortium-irdirc_hope-for-rare-diseases-carousel-activity-7259865036280532992-rQXL" data-id="main-feed-card__full-link" data-tracking-control-name="organization_guest_main-feed-card__full-link" data-tracking-will-navigate aria-label="Nouvelle 6"> </a> <article class="relative pt-1.5 px-2 pb-0 bg-color-background-container container-lined main-feed-activity-card papabear:max-w-[550px]" data-activity-urn="urn:li:activity:7259865036280532992" data-featured-activity-urn="urn:li:activity:7259865036280532992" data-attributed-urn="urn:li:ugcPost:7259865035441680384" data-id="main-feed-card">   <div class="flex items-center font-sans mb-1" data-test-id="main-feed-activity-card__entity-lockup"> <a href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-image" class="relative" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4E0BAQHJB9QKfwWvuA/company-logo_100_100/company-logo_100_100/0/1707478761244?e=2147483647&v=beta&t=8B7EcU6uVcdpq2oQiuKbI1FOfrdWNoqNimDvyUdiCoQ" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour International Rare Diseases Research Consortium (IRDiRC), visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour International Rare Diseases Research Consortium (IRDiRC)" data-tracking-will-navigate> International Rare Diseases Research Consortium (IRDiRC) </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 408 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 2 sem. <span aria-hidden="true" class="text-color-text-low-emphasis before:middot"></span> <span> Modifié </span> </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div class="collapsible-dropdown flex items-center relative hyphens-auto"> <button class="ellipsis-menu__trigger 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href="https://www.linkedin.com/uas/login?fromSignIn=true&session_redirect=https%3A%2F%2Ffr.linkedin.com%2Fcompany%2Finternational-rare-diseases-research-consortium-irdirc&trk=organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect&guestReportContentType=POST&_f=guest-reporting" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect" data-tracking-will-navigate data-item-type="semaphore" data-semaphore-content-type="POST" data-semaphore-content-urn="urn:li:activity:7259865036280532992" data-semaphore-tracking-prefix="organization_guest_main-feed-card_ellipsis-menu-semaphore" data-is-logged-in="false" data-modal="semaphore__toggle" class="semaphore__toggle visited:text-color-text-secondary ellipsis-menu__semaphore ellipsis-menu__item-button flex items-center w-full p-1 cursor-pointer font-sans text-sm font-bold link-styled focus:link-styled link:no-underline active:bg-color-background-container-tint focus:bg-color-background-container-tint hover:bg-color-background-container-tint outline-offset-[-2px]">  <icon class="ellipsis-menu__item-icon text-color-text h-[24px] w-[24px] mr-1" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/iq0x9q37wj214o129ai1yjut"> </icon> Signaler ce post </a>  </li>  </ul>  </div> </div> <div class="attributed-text-segment-list__container relative mt-1 mb-1.5 babybear:mt-0 babybear:mb-0.5"> <p class="attributed-text-segment-list__content text-color-text !text-sm whitespace-pre-wrap break-words " dir="ltr" data-test-id="main-feed-activity-card__commentary">🌍 We are thrilled to share this week’s The Lancet editorial, titled "Hope for rare diseases", which highlights the current campaign urging the World Health Assembly to adopt a resolution on rare diseases in 2025. This resolution, backed by an international coalition of countries, would be a vital step in making rare diseases a global health and equity priority. The editorial also recognizes the recent launch of the <a class="link" href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>ERDERA</a>, a groundbreaking initiative with €380 million in funding and support from over 170 organizations. Together, these developments fuel renewed hope for the 300 million people worldwide affected by rare diseases. However, the challenges remain immense. Patients face delays in diagnosis, limited access to treatments, and prohibitive costs, creating a heavy burden on individuals and their families. While the campaign aims to address these barriers, the editorial reminds us that meaningful change requires strong implementation and substantial funding to make a real impact. Read the editorial now: <a class="link" href="https://lnkd.in/eXwHkJjP?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>https://lnkd.in/eXwHkJjP</a> <a class="link" href="https://fr.linkedin.com/company/rare-diseases-international?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>RARE DISEASES INTERNATIONAL</a> <a class="link" href="https://it.linkedin.com/in/marywang?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>Chiuhui Mary Wang</a></p>  </div> <article aria-label="Post repartagé" class="relative pt-1.5 px-2 pb-1 mb-1 babybear:pt-0.5 babybear:pb-0 babybear:mb-0 container-lined bg-color-background-container feed-reshare-content" data-test-id="feed-reshare-content" data-attributed-urn="urn:li:ugcPost:7259861443531927552" data-activity-urn="urn:li:activity:7259861444471484416" tabindex="0"> <div class="flex items-center font-sans" data-test-id="feed-reshare-content__entity-lockup"> <a href="https://fr.linkedin.com/company/rare-diseases-international?trk=organization_guest_main-feed-card_reshare_feed-actor-image" target="_self" class="relative" data-tracking-control-name="organization_guest_main-feed-card_reshare_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/C4D0BAQHeGJQZgrl5_Q/company-logo_100_100/company-logo_100_100/0/1630570898064/rare_diseases_international_logo?e=2147483647&v=beta&t=HWQ0sqIbPKR4H9FqmIZg4D3c-c64FI47XrOy3hGbw_8" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour RARE DISEASES INTERNATIONAL, visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://fr.linkedin.com/company/rare-diseases-international?trk=organization_guest_main-feed-card_reshare_feed-actor-name" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare_feed-actor-name" aria-label="Voir la page Organisation pour RARE DISEASES INTERNATIONAL" data-tracking-will-navigate> RARE DISEASES INTERNATIONAL </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  13 010 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 2 sem.  </time>  </span> </div>  </div> <div class="attributed-text-segment-list__container relative mt-1 mb-1.5 babybear:mt-0 babybear:mb-0.5"> <p class="attributed-text-segment-list__content text-color-text !text-sm whitespace-pre-wrap break-words " dir="ltr" data-test-id="feed-reshare-content__commentary">📢 New Article Alert: Impact of Patient Advocacy recognized by the Lancet 📢 We’re thrilled to share an article just published by <a class="link" href="https://uk.linkedin.com/company/the-lancet?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>The Lancet Group</a> on 2 November, which underscores the essential role of patient advocacy in advancing rare disease recognition and treatment. This publication is a significant moment for our community and highlights the growing momentum around the 2025 World Health Assembly (WHA) Resolution on Rare Diseases. 📰 Read the article here ➡️ : <a class="link" href="https://lnkd.in/eKTCavjZ?trk=organization_guest_main-feed-card_reshare-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>https://lnkd.in/eKTCavjZ</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Frarediseases&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#RareDiseases</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fadvocacy&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#Advocacy</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fplwrd&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#PLWRD</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fthelancet&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#TheLancet</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fwha&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#WHA</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fresolution4rare&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#Resolution4Rare</a></p>  </div> <iframe class="h-[293px] w-main-feed-card-media" allowfullscreen frameborder="0" data-id="feed-paginated-document-content" data-delayed-url="https://media.licdn.com/embeds/native-document.html" data-native-document-config="{"action":"init","a11y":{"pagination":{"paginationValue":"Page actuelle","paginationLength":"Nbre total de pages"},"sidepanelLeft":{"navButton":"Revenir à la page précédente du document"},"sidepanelRight":{"navButton":"Aller à la page suivante du document"},"topbar":{"cancelButton":"Sortir du plein écran","downloadButton":"Télécharger un document"},"toolbarA11y":{"fullscreenOnButtonA11yControlText":"Accédez au plein écran. 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class="main-feed-card__overlay-link absolute left-0 top-0 h-full w-full z-1 !border-0" href="https://www.linkedin.com/posts/international-rare-diseases-research-consortium-irdirc_irdirc-personalizedtherapies-nof1therapies-activity-7259590684179927041-pRoo" data-id="main-feed-card__full-link" data-tracking-control-name="organization_guest_main-feed-card__full-link" data-tracking-will-navigate aria-label="Nouvelle 7"> </a> <article class="relative pt-1.5 px-2 pb-0 bg-color-background-container container-lined main-feed-activity-card papabear:max-w-[550px]" data-activity-urn="urn:li:activity:7259590684179927041" data-featured-activity-urn="urn:li:activity:7259590684179927041" data-attributed-urn="urn:li:share:7259590682732900353" data-id="main-feed-card">   <div class="flex items-center font-sans mb-1" data-test-id="main-feed-activity-card__entity-lockup"> <a href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-image" class="relative" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4E0BAQHJB9QKfwWvuA/company-logo_100_100/company-logo_100_100/0/1707478761244?e=2147483647&v=beta&t=8B7EcU6uVcdpq2oQiuKbI1FOfrdWNoqNimDvyUdiCoQ" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour International Rare Diseases Research Consortium (IRDiRC), visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour International Rare Diseases Research Consortium (IRDiRC)" data-tracking-will-navigate> International Rare Diseases Research Consortium (IRDiRC) </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 408 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 3 sem. <span aria-hidden="true" class="text-color-text-low-emphasis before:middot"></span> <span> Modifié </span> </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div class="collapsible-dropdown flex items-center relative hyphens-auto"> <button class="ellipsis-menu__trigger 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This exciting review explores the emerging field of N-of-1 genetic therapies, specifically designed for individuals with rare diseases caused by unique genetic variants. This pioneering approach represents a major step toward tailored treatments for ultra-rare conditions. The publication covers: ✅ The concept and potential of N-of-1 therapies for individualized treatment of rare diseases ✅ Real-world cases where successful therapies have been developed ✅ Regulatory, practical, and ethical challenges impacting access and development ✅ A roadmap for the future of N-of-1 therapy development 📰 Read the article here: <a class="link" href="https://lnkd.in/egkADhUQ?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>https://lnkd.in/egkADhUQ</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Firdirc&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#IRDiRC</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fpersonalizedtherapies&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#PersonalizedTherapies</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fnof1therapies&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#Nof1Therapies</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Frarediseases&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#RareDiseases</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fhealthinnovation&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#HealthInnovation</a> <a class="link" href="https://nl.linkedin.com/in/annemieke-aartsma-rus-34b4749?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>Annemieke Aartsma-Rus</a> <a class="link" href="https://nl.linkedin.com/in/anneliene-jonker-4abbbba1?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>Anneliene Jonker</a> <a class="link" href="https://uk.linkedin.com/in/daniel-o-connor-766a436?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>Daniel O'Connor</a> <a class="link" href="https://uk.linkedin.com/company/natureportfolio.?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>Nature Portfolio</a></p>  </div> <ul class="grid grid-cols-6 grid-rows-[60%_40%] w-main-feed-card-media feed-images-content list-none pl-0 " data-test-id="feed-images-content"> <li class="bg-color-background-container-tint text-[0px] col-span-full row-span-full " data-test-id="feed-images-content__list-item" data-position="0"> <img class="lazy-load w-full object-cover object-center h-full babybear:max-h-[400px]" data-delayed-url="https://media.licdn.com/dms/image/v2/D4E22AQFKjMuUwiIabg/feedshare-shrink_2048_1536/feedshare-shrink_2048_1536/0/1730821294433?e=2147483647&v=beta&t=zNGRC9PN-_dd81l290RABL-vu4E8AHNtvvlpxKXxRd4" 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data-activity-urn="urn:li:activity:7259189694805028865" data-featured-activity-urn="urn:li:activity:7259189694805028865" data-attributed-urn="urn:li:share:7259189691579609088" data-id="main-feed-card">   <div class="flex items-center font-sans mb-1" data-test-id="main-feed-activity-card__entity-lockup"> <a href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-image" class="relative" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4E0BAQHJB9QKfwWvuA/company-logo_100_100/company-logo_100_100/0/1707478761244?e=2147483647&v=beta&t=8B7EcU6uVcdpq2oQiuKbI1FOfrdWNoqNimDvyUdiCoQ" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour International Rare Diseases Research Consortium (IRDiRC), visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour International Rare Diseases Research Consortium (IRDiRC)" data-tracking-will-navigate> International Rare Diseases Research Consortium (IRDiRC) </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 408 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 3 sem.  </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div 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href="https://www.linkedin.com/uas/login?fromSignIn=true&session_redirect=https%3A%2F%2Ffr.linkedin.com%2Fcompany%2Finternational-rare-diseases-research-consortium-irdirc&trk=organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect&guestReportContentType=POST&_f=guest-reporting" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect" data-tracking-will-navigate data-item-type="semaphore" data-semaphore-content-type="POST" data-semaphore-content-urn="urn:li:activity:7259189694805028865" data-semaphore-tracking-prefix="organization_guest_main-feed-card_ellipsis-menu-semaphore" data-is-logged-in="false" data-modal="semaphore__toggle" class="semaphore__toggle visited:text-color-text-secondary ellipsis-menu__semaphore ellipsis-menu__item-button flex items-center w-full p-1 cursor-pointer font-sans text-sm font-bold link-styled focus:link-styled link:no-underline active:bg-color-background-container-tint focus:bg-color-background-container-tint hover:bg-color-background-container-tint outline-offset-[-2px]">  <icon class="ellipsis-menu__item-icon text-color-text h-[24px] w-[24px] mr-1" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/iq0x9q37wj214o129ai1yjut"> </icon> Signaler ce post </a>  </li>  </ul>  </div> </div> <div class="attributed-text-segment-list__container relative mt-1 mb-1.5 babybear:mt-0 babybear:mb-0.5"> <p class="attributed-text-segment-list__content text-color-text !text-sm whitespace-pre-wrap break-words " dir="ltr" data-test-id="main-feed-activity-card__commentary">📣 Call for new DSC members 📣 IRDiRC’s  Diagnostic Scientific Committee (DSC) plays a critical role in identifying and addressing current and future bottlenecks to rare disease gene discovery and diagnosis. As we work towards improving rare disease diagnosis globally, the DSC is currently seeking to expand its membership by welcoming new rare disease diagnostic experts for a one-time-renewable 3-year term on the DSC. 💡 Prioritization will be given to applicants with one or more of the following: 1. Represents a Low- or Middle-Income rare disease population or region, 2. Represents the following geographic regions not covered by continuing members: South Asia, Africa, Australia, China, East Asia, and/or 3. Has expertise in one or more of the following fields: use of artificial intelligence approaches to diagnosis, language translation of diagnostic reference tools and/or emerging diagnostic technologies. We welcome individuals who have a strong interest and involvement in activities or initiatives to improve rare disease diagnosis and are passionate about making a positive impact in the field. We are looking for individuals who can commit to quarterly teleconferences, a yearly face-to-face meeting, and regular committee activities, including email correspondence. If you meet these criteria, we encourage you to apply and join our global community of experts and individuals who share the same vision and mission. Please note that this is a volunteer membership. 📌 To apply, please send us your resume, bio-sketch, and letter of motivation to <a class="link" href="mailto:scientific.secretariat@irdirc.org?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>scientific.secretariat@irdirc.org</a> before 25 November 2024. The International Rare Diseases Research Consortium (IRDiRC) is dedicated to achieving its goal for 2027 of “enabling all people with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention”. We believe in bringing the rare diseases community together, sharing knowledge and experience, and working collaboratively across borders to advance rare disease research and avoid duplication of efforts. Our organization comprises 3 Constituent Committees: Funders, Companies and Patient Advocates, and 4 Scientific Committees: Diagnostics, Therapies, Interdisciplinary, and Regulatory, that tackle different aspects of rare disease research. Example work by the DSC is highlighted in the following publication: Addressing diagnostic gaps and priorities of the global rare diseases community: Recommendations from the IRDiRC diagnostics scientific committee. Eur J Med Genet. 2024 Aug. doi: <a class="link" href="https://lnkd.in/ey8h37jT?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>https://lnkd.in/ey8h37jT</a> More information about the committee: <a class="link" href="https://irdirc.org/dsc/?trk=organization_guest_main-feed-card-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>https://irdirc.org/dsc/</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Firdirc&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#IRDiRC</a> <a class="link" 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data-id="main-feed-card__full-link" data-tracking-control-name="organization_guest_main-feed-card__full-link" data-tracking-will-navigate aria-label="Nouvelle 9"> </a> <article class="relative pt-1.5 px-2 pb-0 bg-color-background-container container-lined main-feed-activity-card papabear:max-w-[550px]" data-activity-urn="urn:li:activity:7257319285151219712" data-featured-activity-urn="urn:li:activity:7257319285151219712" data-attributed-urn="urn:li:ugcPost:7257319284521988096" data-id="main-feed-card">   <div class="flex items-center font-sans mb-1" data-test-id="main-feed-activity-card__entity-lockup"> <a href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-image" class="relative" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4E0BAQHJB9QKfwWvuA/company-logo_100_100/company-logo_100_100/0/1707478761244?e=2147483647&v=beta&t=8B7EcU6uVcdpq2oQiuKbI1FOfrdWNoqNimDvyUdiCoQ" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour International Rare Diseases Research Consortium (IRDiRC), visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour International Rare Diseases Research Consortium (IRDiRC)" data-tracking-will-navigate> International Rare Diseases Research Consortium (IRDiRC) </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 408 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 3 sem.  </time>  </span> </div>  </div> <div class="ellipsis-menu absolute right-0 top-0 !mr-0.5" data-test-id="main-feed-activity-card__ellipsis-menu"> <div class="collapsible-dropdown flex items-center relative hyphens-auto"> <button class="ellipsis-menu__trigger collapsible-dropdown__button btn-md btn-tertiary cursor-pointer !py-[6px] !px-1 flex items-center rounded-[50%] " aria-expanded="false" aria-label="Ouvrir le menu" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-trigger" tabindex="0"> <icon class="ellipsis-menu__trigger-icon m-0 p-0 centered-icon" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/671xosfpvk4c0kqtyl87hashi"></icon> </button> <ul class="collapsible-dropdown__list hidden container-raised absolute w-auto overflow-y-auto flex-col items-stretch z-1 bottom-auto top-[100%]" role="menu" tabindex="-1"> <li class="ellipsis-menu__item border-t-1 border-solid border-color-border-low-emphasis first-of-type:border-none flex"> <a href="https://www.linkedin.com/uas/login?fromSignIn=true&session_redirect=https%3A%2F%2Ffr.linkedin.com%2Fcompany%2Finternational-rare-diseases-research-consortium-irdirc&trk=organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect&guestReportContentType=POST&_f=guest-reporting" data-tracking-control-name="organization_guest_main-feed-card_ellipsis-menu-semaphore-sign-in-redirect" data-tracking-will-navigate data-item-type="semaphore" data-semaphore-content-type="POST" data-semaphore-content-urn="urn:li:activity:7257319285151219712" data-semaphore-tracking-prefix="organization_guest_main-feed-card_ellipsis-menu-semaphore" data-is-logged-in="false" data-modal="semaphore__toggle" class="semaphore__toggle visited:text-color-text-secondary ellipsis-menu__semaphore ellipsis-menu__item-button flex items-center w-full p-1 cursor-pointer font-sans text-sm font-bold link-styled focus:link-styled link:no-underline active:bg-color-background-container-tint focus:bg-color-background-container-tint hover:bg-color-background-container-tint outline-offset-[-2px]">  <icon class="ellipsis-menu__item-icon text-color-text h-[24px] w-[24px] mr-1" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/iq0x9q37wj214o129ai1yjut"> </icon> Signaler ce post </a>  </li>  </ul>  </div> </div> <div class="attributed-text-segment-list__container relative mt-1 mb-1.5 babybear:mt-0 babybear:mb-0.5"> <p class="attributed-text-segment-list__content text-color-text !text-sm whitespace-pre-wrap break-words " dir="ltr" data-test-id="main-feed-activity-card__commentary">✨ Highlights from the <a class="link" href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>ERDERA</a> Opening Ceremony ✨ We were thrilled to take part in this landmark event, with nearly 600 participants joining both online and in Paris. Our Project Manager, Alexandra Tãtaru, was there to represent <a class="link" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>International Rare Diseases Research Consortium (IRDiRC)</a>! Inspiring speakers emphasized the importance of ERDERA in structuring the rare disease ecosystem, focusing on innovation and collaboration to make a real impact on patients' lives. Thank you to all participants and speakers for their commitment! <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Ferdera&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#ERDERA</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Frarediseases&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#RareDiseases</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Finnovation&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#Innovation</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fhealthcare&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#Healthcare</a></p>  </div> <article aria-label="Post repartagé" class="relative pt-1.5 px-2 pb-1 mb-1 babybear:pt-0.5 babybear:pb-0 babybear:mb-0 container-lined bg-color-background-container feed-reshare-content" data-test-id="feed-reshare-content" data-attributed-urn="urn:li:ugcPost:7256793486056714240" data-activity-urn="urn:li:activity:7256793487445028864" tabindex="0"> <div class="flex items-center font-sans" data-test-id="feed-reshare-content__entity-lockup"> <a href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card_reshare_feed-actor-image" target="_self" class="relative" data-tracking-control-name="organization_guest_main-feed-card_reshare_feed-actor-image" data-tracking-will-navigate> <img class="inline-block relative w-6 h-6 " data-delayed-url="https://media.licdn.com/dms/image/v2/D4D0BAQHbHoA_QcFy4A/company-logo_100_100/company-logo_100_100/0/1725294108827/erdera_logo?e=2147483647&v=beta&t=78vpKTwRCNymHAhRs8SQ0bBasqxHsrzYwkDEzxJe5JY" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour ERDERA, visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card_reshare_feed-actor-name" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare_feed-actor-name" aria-label="Voir la page Organisation pour ERDERA" data-tracking-will-navigate> ERDERA </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 813 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 4 sem.  </time>  </span> </div>  </div> <div class="attributed-text-segment-list__container relative mt-1 mb-1.5 babybear:mt-0 babybear:mb-0.5"> <p class="attributed-text-segment-list__content text-color-text !text-sm whitespace-pre-wrap break-words " dir="ltr" data-test-id="feed-reshare-content__commentary">🌟 ERDERA Opening Ceremony Highlights 🌟 We've just wrapped up an inspiring <a class="link" href="https://www.linkedin.com/company/erdera?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>ERDERA</a> opening ceremony with nearly 600 attendees joining online and in person in Paris. Here are some key takeaways from our distinguished speakers: 🔬 <a class="link" href="https://fr.linkedin.com/in/nacer-boubenna-a0a4a017?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>Nacer Boubenna</a>, Scientific Director, Head of the Biology and Health Department (French Ministry of Higher Education and Research), emphasised the critical role of ERDERA in structuring the ecosystem to benefit patients: “ERDERA enables collaboration across diverse areas, ranging from research to innovation in diagnosis and care” 🌍 <a class="link" href="https://fr.linkedin.com/in/anne-sophie-lapointe-phd-80502b47?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>Anne-Sophie Lapointe (PhD)</a>, Head of Rare Disease Mission, Department to the Director General of Healthcare Provision (<a class="link" href="https://fr.linkedin.com/company/direction-g%C3%A9n%C3%A9rale-de-l-offre-de-soins?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>Direction générale de l'offre de soins (DGOS)</a>, reminded us that capacity building is essential for creating sustainable networks: “We possess the knowledge and tools to change the lives of millions affected by rare diseases. Let us commit today to shaping a future where no one is left behind”. 💡<a class="link" href="https://be.linkedin.com/in/irene-norstedt-b1165918?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>Irene Norstedt</a>, Director, People Directorate DG RTD, <a class="link" href="https://be.linkedin.com/company/european-commission?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>European Commission</a>, highlighted the EU's commitment to advancing rare disease research: “We have invested more than €3 billion in collaborative research over the past 20 years and this has translated into better diagnosis and the development of several new orphan medicines”. 🔧 Arjon Van Hengel , Deputy Head of Unit for Health Innovations & Ecosystems at the <a class="link" href="https://be.linkedin.com/company/european-commission?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>European Commission</a>, noted that ERDERA's efforts could greatly progress health research in rare diseases and other fields by pioneering new approaches: “Key to ERDERA’s success are the 24 European Reference Networks (ERNs) and their valuable clinical expertise”. 👥 <a class="link" href="https://fr.linkedin.com/in/virginie-bros-facer?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>Virginie Bros-Facer</a>, CEO, <a class="link" href="https://fr.linkedin.com/company/eurordis?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>EURORDIS-Rare Diseases Europe</a>, referred to the opportunity this new partnership brings to address fragmentation in clinical research: “The strength of ERDERA lies in its comprehensive and inclusive approach, uniting researchers, clinicians, industry partners, and most importantly, patients”. 💊 Guillaume Canaud, Hôpital Necker-Enfants malades AP-HP, shared his inspiring journey of repurposing a molecule originally developed against breast cancer to treat overgrowth syndromes: “From a single patient to a US FDA approved drug”. 💼 <a class="link" href="https://fr.linkedin.com/in/james-levine-b114244?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>James Levine</a>, President, <a class="link" href="https://fr.linkedin.com/company/fondation-ipsen?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>Fondation Ipsen </a>, discussed de-risking and funding strategies in rare diseases: “Patient associations are absolutely critical in rare diseases, but so are links with academia, industry, and regulatory bodies”. 🌟 <a class="link" href="https://fr.linkedin.com/in/daria-julkowska-2786b957?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>Daria Julkowska</a>, ERDERA coordinator, closed the event with a call to action: “Help us empower rare by making disease concrete and measurable” Thank you to all our speakers and participants for making this event a success! Read more about the event here: <a class="link" href="https://lnkd.in/dR-Z8DVX?trk=organization_guest_main-feed-card_reshare-text" target="_self" rel="nofollow" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>https://lnkd.in/dR-Z8DVX</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Ferdera&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#ERDERA</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Frarediseases&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#RareDiseases</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fresearch&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#Research</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Finnovation&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#Innovation</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fhealthcare&_l=fr&trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>#Healthcare</a> <a class="link" href="https://be.linkedin.com/company/european-health-and-digital-executive-agency-hadea?trk=organization_guest_main-feed-card_reshare-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card_reshare-text" data-tracking-will-navigate>European Health and Digital Executive Agency (HaDEA)</a></p>  </div> <ul class="grid grid-cols-6 grid-rows-[60%_40%] w-main-feed-card-media feed-images-content list-none pl-0 gap-0.125 h-[425px] babybear:h-[360px]" data-test-id="feed-images-content"> <li class="bg-color-background-container-tint text-[0px] col-span-3 " data-test-id="feed-images-content__list-item" data-position="0"> <img class="lazy-load w-full object-cover object-center h-full babybear:max-h-[400px]" data-delayed-url="https://media.licdn.com/dms/image/v2/D4D22AQHvRc-m_RnrHg/feedshare-shrink_2048_1536/feedshare-shrink_2048_1536/0/1730154389925?e=2147483647&v=beta&t=teDj5iMrO6n9J_EM_quowcXar8P0AKn0NnFnY1hN0Xo" 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data-delayed-url="https://media.licdn.com/dms/image/v2/D4D22AQF00bwfeVWgyA/feedshare-shrink_2048_1536/feedshare-shrink_2048_1536/0/1730154390023?e=2147483647&v=beta&t=Y9PMjZNnQl-kKmOjCDUMG_d5mEJaRs0SYYhn3Mb5ST8" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/921ynb2z53z33mhm3061qvjag" alt="Aucune description alternative pour cette image">  </li> <li class="bg-color-background-container-tint text-[0px] col-span-2 " data-test-id="feed-images-content__list-item" data-position="3"> <img class="lazy-load w-full object-cover object-center h-full babybear:max-h-[400px]" data-delayed-url="https://media.licdn.com/dms/image/v2/D4D22AQEiXbadprSXFw/feedshare-shrink_2048_1536/feedshare-shrink_2048_1536/0/1730154390032?e=2147483647&v=beta&t=oBz_ftCrvW76F0AcIoLcyX8XuzwepK3c9pu1lsYMKxE" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/921ynb2z53z33mhm3061qvjag" alt="Aucune description alternative pour cette image">  </li> <li class="bg-color-background-container-tint text-[0px] col-span-2 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data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt="Voir la page d’organisation pour International Rare Diseases Research Consortium (IRDiRC), visuel">  </a> <div class="flex flex-col self-start min-w-0 ml-1 "> <div class="text-color-text "> <a class="text-sm link-styled no-underline leading-open" href="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc?trk=organization_guest_main-feed-card_feed-actor-name" data-tracking-control-name="organization_guest_main-feed-card_feed-actor-name" aria-label="Voir la page Organisation pour International Rare Diseases Research Consortium (IRDiRC)" data-tracking-will-navigate> International Rare Diseases Research Consortium (IRDiRC) </a>  </div> <p class="!text-xs text-color-text-low-emphasis leading-[1.33333] m-0 truncate">  1 408 abonnés </p> <span class="!text-xs text-color-text-low-emphasis leading-[1.33333] flex"> <time class="flex-none"> 1 mois  </time>  </span> </div>  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What are the impacts of rare designation? Moderated by Daniel O’Connor (ABPI), this panel explored the significance of cross-stakeholder recognition of rare disease status. The session addressed the unique challenges of the diagnostic journey and access to treatments, questioning how rare designation makes a difference and what is still needed to achieve better alignment and harmonisation. Working Group: R&D Funding Models Led by Annamaria Merico (Fondazione Telethon) this session delved into innovative funding models to support research and development for rare diseases. Panel: Interconnected Solutions - Global Networks for Rare Disease Research and Care David Pearce (IRDiRC Chair), discussed the importance of creating global networks to encourage advancements in rare disease research and improve patient care. Public-Private Partnerships to Accelerate Development and Boost Innovation in Rare Diseases Matteo Scarabelli (EFPIA) and Gabriella Almberg (UCB) shared how partnerships between the public and private sectors are crucial in driving innovation and accelerating development for rare disease treatments. Panel: How does access to healthcare, treatment, and diagnosis differ across Europe? Moderated by Samantha Parker (<a class="link" href="https://es.linkedin.com/company/italfarmaco?trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>Italfarmaco</a> and Vice Chair of IRDiRC), this session highlighted the disparities in healthcare access across Europe and discussed potential solutions to ensure equal treatment for all rare disease patients. Patient Voice in Clinical Trials Design and Outcomes Finally, Samantha Parker also spoke about the essential role of patients in shaping clinical trial design and outcomes, reinforcing the importance of patient advocacy in rare disease treatment development. Congratulations to all the speakers and participants for these insightful discussions, driving progress in rare disease research and care! 👏 <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Fwodc&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#WODC</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Frarediseases&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" data-tracking-control-name="organization_guest_main-feed-card-text" data-tracking-will-navigate>#RareDiseases</a> <a class="link" href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww.linkedin.com%2Ffeed%2Fhashtag%2Firdirc&_l=fr&trk=organization_guest_main-feed-card-text" target="_self" 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<img class="inline-block relative w-16 h-16 contextual-sign-in-modal__img m-auto" data-delayed-url="https://media.licdn.com/dms/image/v2/D4E0BAQHJB9QKfwWvuA/company-logo_200_200/company-logo_200_200/0/1707478761244?e=2147483647&v=beta&t=yIIkKchOddqvaTJcEYJUv84RaON5GJT2RoJhMCebJ4I" data-ghost-classes="bg-color-entity-ghost-background" data-ghost-url="https://static.licdn.com/aero-v1/sc/h/cs8pjfgyw96g44ln9r7tct85f" alt> <h2 class="contextual-sign-in-modal__context-screen-title font-sans text-xl text-color-text my-2 mx-4 text-center" id="base-contextual-sign-in-modal-modal-header"> Identifiez-vous pour voir qui vous connaissez déjà chez International Rare Diseases Research Consortium (IRDiRC) </h2>  <div class="contextual-sign-in-modal__btn-container m-auto w-[320px] babybear:w-full">  <div class="w-full max-w-[400px] mx-auto"> <div class="google-auth-button">  <div class="google-auth-button__placeholder " data-theme="filled_blue" data-logo-alignment="center"></div>  </div> </div> <div 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shadow-color-border-faint transition-[transform] ease-[cubic-bezier(0.25,0.1,0.25,1.0)] duration-[0.33s] focus:outline-0 w-[1128px] mamabear:w-[744px] babybear:w-[360px] rounded-md"> <button class="modal__dismiss btn-tertiary h-[40px] w-[40px] p-0 rounded-full indent-0 sign-in-modal__dismiss absolute right-0 cursor-pointer m-[20px]" aria-label="Ignorer" data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_dismiss"> <icon class="sign-in-modal__dismiss-icon" data-delayed-url="https://static.licdn.com/aero-v1/sc/h/gs508lg3t2o81tq7pmcgn6m2"></icon> </button> <div class="modal__main w-full"> <div class="sign-in-modal__screen flex flex-col py-4 w-[513px] babybear:w-full px-3"> <h2 class="sign-in-modal__header font-sans text-display-md text-color-text "> Bon retour parmi nous </h2> <code id="i18n_sign_in_form_show_text" style="display: none"></code> <code id="i18n_sign_in_form_show_label" style="display: none"></code> <code id="i18n_sign_in_form_hide_text" style="display: none"></code> <code id="i18n_sign_in_form_hide_label" style="display: none"></code> <code id="i18n_username_error_empty" style="display: none"></code> <code id="i18n_username_error_too_long" style="display: none"></code> <code id="i18n_username_error_too_short" style="display: none"></code> <code id="i18n_password_error_empty" style="display: none"></code> <code id="i18n_password_error_too_short" style="display: none"></code> <code id="i18n_password_error_too_long" style="display: none"></code>  <form data-id="sign-in-form" action="https://www.linkedin.com/uas/login-submit" method="post" novalidate class="mt-1.5 mb-2"> <input name="loginCsrfParam" value="f05f95f7-1cd1-459f-8d48-853f5a489e7b" type="hidden"> <div class="flex flex-col"> <div class="mt-1.5" data-js-module-id="guest-input"> <div class="flex flex-col"> <label class="input-label mb-1" for="base-sign-in-modal_session_key"> E-mail ou téléphone </label> <div class="text-input flex"> <input class="text-color-text font-sans text-md outline-0 bg-color-transparent grow" autocomplete="username" id="base-sign-in-modal_session_key" name="session_key" required data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_sign-in-session-key" data-tracking-client-ingraph type="text"> </div> </div> <p class="input-helper mt-1.5" for="base-sign-in-modal_session_key" role="alert" data-js-module-id="guest-input__message"></p> </div> <div class="mt-1.5" data-js-module-id="guest-input"> <div class="flex flex-col"> <label class="input-label mb-1" for="base-sign-in-modal_session_password"> Mot de passe </label> <div class="text-input flex"> <input class="text-color-text font-sans text-md outline-0 bg-color-transparent grow" autocomplete="current-password" id="base-sign-in-modal_session_password" name="session_password" required data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_sign-in-password" data-tracking-client-ingraph type="password"> <button aria-live="assertive" aria-relevant="text" data-id="sign-in-form__password-visibility-toggle" class="font-sans text-md font-bold text-color-action z-10 ml-[12px] hover:cursor-pointer" aria-label="Affichez votre mot de passe LinkedIn" data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_sign-in-password-visibility-toggle-btn" type="button">Afficher</button> </div> </div> <p class="input-helper mt-1.5" for="base-sign-in-modal_session_password" role="alert" data-js-module-id="guest-input__message"></p> </div> <input name="session_redirect" value="https://fr.linkedin.com/company/international-rare-diseases-research-consortium-irdirc" type="hidden">  </div> <div data-id="sign-in-form__footer" class="flex justify-between sign-in-form__footer--full-width"> <a data-id="sign-in-form__forgot-password" class="font-sans text-md font-bold link leading-regular sign-in-form__forgot-password--full-width" href="https://www.linkedin.com/uas/request-password-reset?trk=organization_guest_contextual-sign-in-modal_sign-in-modal_forgot_password" data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_forgot_password" data-tracking-will-navigate>Mot de passe oublié ?</a>  <input name="trk" value="organization_guest_contextual-sign-in-modal_sign-in-modal_sign-in-submit" type="hidden"> <button class="btn-md btn-primary flex-shrink-0 cursor-pointer sign-in-form__submit-btn--full-width" data-id="sign-in-form__submit-btn" data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_sign-in-submit-btn" data-tracking-client-ingraph data-tracking-litms type="submit"> S’identifier </button> </div> <div class="sign-in-form__divider left-right-divider pt-2 pb-3"> <p class="sign-in-form__divider-text font-sans text-sm text-color-text px-2"> ou </p> </div> </form> <div class="w-full max-w-[400px] mx-auto"> <div class="google-auth-button" data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_google-auth-button" data-tracking-client-ingraph> <code id="isTermsAndConditionsSkipEnabledAuthButton" style="display: none"></code> <p class="linkedin-tc__text text-color-text-low-emphasis text-xs pb-2" data-impression-id="organization_guest_contextual-sign-in-modal_sign-in-modal__button-skip-tc-text"> En cliquant sur Continuer pour vous inscrire ou vous identifier, vous acceptez les <a href="/legal/user-agreement?trk=organization_guest_contextual-sign-in-modal_sign-in-modal_auth-button_user-agreement" target="_blank" data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_auth-button_user-agreement" data-tracking-will-navigate="true">Conditions d’utilisation</a>, la <a href="/legal/privacy-policy?trk=organization_guest_contextual-sign-in-modal_sign-in-modal_auth-button_privacy-policy" target="_blank" data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_auth-button_privacy-policy" data-tracking-will-navigate="true">Politique de confidentialité</a> et la <a href="/legal/cookie-policy?trk=organization_guest_contextual-sign-in-modal_sign-in-modal_auth-button_cookie-policy" target="_blank" data-tracking-control-name="organization_guest_contextual-sign-in-modal_sign-in-modal_auth-button_cookie-policy" data-tracking-will-navigate="true">Politique relative aux cookies</a> de LinkedIn. </p> <div class="google-auth-button__placeholder google-auth-button__placeholder--black-border" data-theme="outline" data-logo-alignment="center"></div>  </div> </div>  <p class="sign-in-modal__join-now m-auto font-sans text-md text-color-text mt-2"> Nouveau sur LinkedIn ? <a 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href="https://www.linkedin.com/signup?session_redirect=https%3A%2F%2Fwww%2Elinkedin%2Ecom%2Fcompany%2Finternational-rare-diseases-research-consortium-irdirc&_l=fr&trk=organization_guest_contextual-sign-in-modal_join-link" data-tracking-control-name="organization_guest_contextual-sign-in-modal_join-link" data-tracking-will-navigate="true" class="contextual-sign-in-modal__join-link">Inscrivez-vous maintenant</a> </p> <p class="linkedin-tc__text text-color-text-low-emphasis text-xs pb-2 contextual-sign-in-modal__terms-and-conditions m-auto w-[320px] pt-2 babybear:w-full" data-impression-id="linkedin-tc__button-skip-tc-text"> En cliquant sur Continuer pour vous inscrire ou vous identifier, vous acceptez les <a href="/legal/user-agreement?trk=linkedin-tc_auth-button_user-agreement" target="_blank" data-tracking-control-name="linkedin-tc_auth-button_user-agreement" data-tracking-will-navigate="true">Conditions d’utilisation</a>, la <a href="/legal/privacy-policy?trk=linkedin-tc_auth-button_privacy-policy" target="_blank" data-tracking-control-name="linkedin-tc_auth-button_privacy-policy" data-tracking-will-navigate="true">Politique de confidentialité</a> et la <a href="/legal/cookie-policy?trk=linkedin-tc_auth-button_cookie-policy" target="_blank" data-tracking-control-name="linkedin-tc_auth-button_cookie-policy" data-tracking-will-navigate="true">Politique relative aux cookies</a> de LinkedIn. </p> </div> </div>  </section> </div> </div> </div> </div>  </div> <code id="disableOneTapOnInit" style="display: none"></code> <code id="flagshipOrganizationTracking" style="display: none"></code> <script src="https://static.licdn.com/aero-v1/sc/h/7itt46rafycxiwozfd111d2we" async></script>  <script src="https://static.licdn.com/aero-v1/sc/h/eef4p9np6sualhph80ir8m1im" async defer></script> <script data-delayed-url="https://static.licdn.com/aero-v1/sc/h/19m2m2iij3pcbxe4bkogyzklj" data-module-id="media-player"></script>  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