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href="//www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/landing/orphan_search.jsp&mid=WC0b01ac058001d12b" title="European Medicines Agency">European Medicines Agency</a></li> <li><a class="orpha-blue fw-bold" href="//www.irdirc.org/" title="IRDiRC">IRDiRC</a></li> <li><a class="orpha-blue fw-bold" href="//rarediseases.info.nih.gov/" title="Office of rare diseases research (US)">Office of rare diseases research (US)</a></li> <li><a class="orpha-blue fw-bold" href="https://ec.europa.eu/health/rare_diseases/expert_group_en" title="EC Expert Group on Rare Diseases (EU)">EC Expert Group on Rare Diseases (EU)</a></li> <li><a class="orpha-blue fw-bold" href="//ec.europa.eu/health/ern/networks_en" title="European Reference Networks">European Reference Networks</a></li> <li><a class="orpha-blue fw-bold" href="https://ojrd.biomedcentral.com/" title="header.ern_ojrd_texttext">OJRD</a> </li> </ul> </div> </div> <div class="col-lg-3 col-12 row bg-white ms-2 text-center report-button align-self-start opacity-hover"> <a href="/fr/other-information/reports" class="text-white h2 text-decoration-none p-5">Les Cahiers d'Orphanet</a> </div> </div> <div class="container d-flex mx-auto justify-content-around gap-4 my-4 flex-wrap"> <div class="col-lg-4 col-12 row text-center opacity-hover border-orpha-news border-4 border"> <a href="https://france.orphanews.org/archives.html" class="text-white h2 text-decoration-none align-self-center px-5 py-3"> <img class="align-self-center" height="45" alt="Lire la derni猫re newsletter" src="/build/images/logo-orphanews.png"> </a> </div> <div class="col-lg-4 col-12 row text-center opacity-hover border-orpha-data border-4 border"> <a href="//www.orphadata.com/" class="text-white h2 text-decoration-none align-self-center px-5 py-3"> <img class="align-self-center" height="45" alt="Acc茅der 脿 Orphadata" src="/build/images/logo-orphadata.png"> </a> </div> <div class="col-lg-4 col-12 row text-center opacity-hover border-blue border-4 border"> <a href="//www.orphadata.com/ontologies/" class="text-white h2 text-decoration-none align-self-center px-5 py-3"> <img class="align-self-center" height="45" alt="Acc茅der 脿 ORDO" src="/build/images/logo-ordo.png"> </a> </div> </div> </nav> <div class="modal fade " id="socialShare" tabindex="-1" aria-labelledby="socialShare" aria-hidden="true"> <div class="modal-dialog"> <div class="modal-content rounded-0"> <div class="modal-header p-0 justify-content-end"> <div type="button" class="text-white bg-orpa-blue py-1 px-3 fs-4" data-bs-dismiss="modal" aria-label="Close">X</div> </div> <div class="modal-body"> <ul class="list-unstyled text-center"> <li class="mb-4"> <a class="orpha-blue" href="https://www.linkedin.com/feed/?shareActive=true&text=http://www.orpha.net/fr" target="_blank" title="Partager"> <i class="fab fa-lg fa-linkedin"></i> Partager</a> </li> <li> <a class="orpha-blue" href="https://www.facebook.com/sharer/sharer.php?u=http://www.orpha.net/fr" target="_blank" title="Partager"> <i class="fab fa-lg fa-facebook-square"></i> Partager</a> </li> </ul> </div> </div> </div> </div> </header> <main class="container-fluid p-0"> <article class="home bg-image w-100 pt-5 text-center"> <nav class="row-fluid"> <div class="col-10 col-xl-4 mx-auto mb-4"> <div class="current-event"> </div> <h1 class="display-6 mt-3">Connaissances sur les maladies rares et les m茅dicaments orphelins</h1> <h2 class="col-lg-8 mx-auto h4 m-4">芦 Aucune maladie n'est trop <strong>rare</strong> pour ne pas m茅riter attention 禄</h2> <p class="display-6">Acc茅dez 脿 nos Services</p> <hr /> </div> <section class="col-xl-8 col-11 pb-5 mx-auto"> <div class="row g-3 mb-5"> <article class="col-lg-3 col-6"><div class="service-tile text-black disease py-3 px-1"> <a href="/fr/disease" class="d-block h-100 w-100" title="Inventaire, classification et encyclop茅die des maladies rares, avec les g猫nes associ茅s"> <div class="d-flex h-100 flex-column"> <span class="icon-container mb-2"><i class="fas fa-viruses fa-3x"></i></span> <p class="lh-1">Inventaire, classification et encyclop茅die des maladies rares, avec les g猫nes associ茅s</p> </div> </a> </div> </article> <article class="col-lg-3 col-6"><div class="service-tile text-black drug py-3 px-1"> <a href="/fr/drug" class="d-block h-100 w-100" title="Inventaire des m茅dicaments orphelins"> <div class="d-flex h-100 flex-column"> <span class="icon-container mb-2"><i class="fas fa-pills fa-3x"></i></span> <p class="lh-1">Inventaire des m茅dicaments orphelins</p> </div> </a> </div> </article> <article class="col-lg-3 col-6"><div class="service-tile text-black organisation py-3 px-1"> <a href="/fr/patient-organisations" class="d-block h-100 w-100" title="R茅pertoire des associations et services aux patients"> <div class="d-flex h-100 flex-column"> <span class="icon-container mb-2"><i class="fas fa-users fa-3x"></i></span> <p class="lh-1">R茅pertoire des associations et services aux patients</p> </div> </a> </div> </article> <article class="col-lg-3 col-6"><div class="service-tile text-black professional py-3 px-1"> <a href="/fr/institutions" class="d-block h-100 w-100" title="R茅pertoire des professionnels et institutions"> <div class="d-flex h-100 flex-column"> <span class="icon-container mb-2"><i class="fas fa-user-md fa-3x"></i></span> <p class="lh-1">R茅pertoire des professionnels et institutions</p> </div> </a> </div> </article> <article class="col-lg-3 col-6"><div class="service-tile text-black network py-3 px-1"> <a href="/fr/expert-centres" class="d-block h-100 w-100" title="R茅pertoire des centres experts"> <div class="d-flex h-100 flex-column"> <span class="icon-container mb-2"><i class="fas fa-hospital fa-3x"></i></span> <p class="lh-1">R茅pertoire des centres experts</p> </div> </a> </div> </article> <article class="col-lg-3 col-6"><div class="service-tile text-black diagnostic py-3 px-1"> <a href="/fr/diagnostic-tests/diagnostics" class="d-block h-100 w-100" title="R茅pertoire des laboratoires m茅dicaux fournissant des tests diagnostiques"> <div class="d-flex h-100 flex-column"> <span class="icon-container mb-2"><i class="fas fa-vial fa-3x"></i></span> <p class="lh-1">R茅pertoire des laboratoires m茅dicaux fournissant des tests diagnostiques</p> </div> </a> </div> </article> <article class="col-xl-3 col-lg-3 col-md-6 col-sm-6 col-6"><div class="service-tile text-black research py-3 px-1"> <a href="/fr/research-trials/research-projects" class="d-block h-100 w-100" title="R茅pertoire des projets de recherche en cours, essais cliniques, registres et biobanques"> <div class="d-flex h-100 flex-column"> <span class="icon-container mb-2"><i class="fa-solid fa-flask-vial fa-3x"></i></span> <p class="lh-1">R茅pertoire des projets de recherche en cours, essais cliniques, registres et biobanques</p> </div> </a> </div> </article> <article class="col-lg-3 col-6"><div class="service-tile text-black report py-3 px-1"> <a href="/fr/other-information/reports" class="d-block h-100 w-100" title="Collection de rapports th茅matiques : les Cahiers d'Orphanet"> <div class="d-flex h-100 flex-column"> <span class="icon-container mb-2"><i class="fas fa-book-open fa-3x"></i></span> <p class="lh-1">Collection de rapports th茅matiques : les Cahiers d'Orphanet</p> </div> </a> </div> </article> </div> <form name="simple_disorder_name_search" method="post" action="/fr/disease"> <div class="row"> <div class="col-12 col-xl-10 col-md-9 mx-auto d-flex align-items-center no-radius home-search"> <i class="fs-4 fas fa-search d-none d-md-block me-2"></i> <input type="text" id="simple_disorder_name_search_name" name="simple_disorder_name_search[name]" required="required" placeholder="Chercher une maladie" class="js-autocomplete form-control" data-autocomplete-url="/fr/disease/autocomplete/disorders_search_fr" /> <button type="submit" id="simple_disorder_name_search_search" name="simple_disorder_name_search[search]" class="btn-primary btn">Chercher</button> </div> </div> <input type="hidden" id="simple_disorder_name_search_mode" name="simple_disorder_name_search[mode]" value="name" /></form> </section> </nav> <div class="home-body pt-4 lh-sm"> <div class="d-lg-flex justify-content-around p-5"> <a class="text-decoration-none" href="//international.orphanews.org/summary/editorial/nl/id-200327.html" target="_blank" title="COVID19"> <img class="img-fluid" alt="COVID19" src="/build/images/FR/COVID-19-RareDiseases.png"> </a> <a href="//international.orphanews.org/newsletter-en/editorial/nl/en20200314.html#or_resources-for-refugees-and-displaced-persons-with-rare-diseases" target="_blank" title="Rare Diseases Resources for Refugees/Displaced Persons"> <img class="img-fluid" alt="Rare Diseases Resources for Refugees/Displaced Persons" src="/build/images/FR/Ukraine.png"> </a> </div> <div class="mx-auto pb-4 w-80"> <div class="whatis p-4 col-xxl-6 col-lg-8 col-12 mx-auto"> <h2 class="fs-1 mb-4 mt-10">Qu'est-ce qu'<strong>Orphanet</strong> ?</h2> <hr/> <div class="col-lg-7 col-md-10 mt-4 col-12 mx-auto text-start"> <p>Orphanet est une ressource unique, rassemblant et am茅liorant la connaissance sur les maladies rares, afin de faciliter et perfectionner le diagnostic, le soin et le traitement des patients atteints de maladies rares. L'objectif d鈥橭rphanet est de fournir des informations de haute qualit茅 sur les maladies rares et de permettre le m锚me acc猫s 脿 la connaissance pour toutes les parties prenantes. Orphanet d茅veloppe 茅galement la nomenclature d鈥橭rphanet sur les maladies rares (code ORPHA), essentielle 脿 l鈥檃m茅lioration de la visibilit茅 des maladies rares dans les syst猫mes d鈥檌nformation de sant茅 et de recherche. </p> <p>Orphanet a 茅t茅 cr茅茅 en France par l鈥橧NSERM (Institut national de la sant茅 et de la recherche m茅dicale) en 1997. Cette initiative est devenue un effort europ茅en 脿 partir de l'an 2000, financ茅e par des contrats de la Commission europ茅enne : Orphanet s'est progressivement transform茅 en un Consortium de 40 pays, r茅partis en Europe et 脿 travers le monde. </p> </div> <a class="mx-3" href="//www.inserm.fr/" target="_blank" title="Logo INSERM"> <img width="130px" alt="Logo INSERM" src="/build/images/logo-inserm.png"> </a> <a class="mx-3" href="//ec.europa.eu/health/rare_diseases/policy/index_en.htm" target="_blank" title="Logo Health Program"> <img width="130px" alt="Logo Health Program" src="/build/images/EU_flag_and_co-funded_by_health_programme.jpg"> </a> <div class="p-4"> <a class="btn-blue me-3" href="/fr/other-information/about_orphanet" title="Regardez notre vid茅o"> Regardez notre vid茅o </a> <a class="btn-blue me-3" href="/fr/other-information/about_orphanet#about_orphanet" title="En savoir plus"> En savoir plus </a> </div> <a class="btn-blue mb-5" href="/fr/other-information/about_orphanet?stapage=national" title="Sites internet nationaux d'Orphanet"> Sites internet nationaux d'Orphanet </a> </div> <div class="platforms bg-white d-flex justify-content-around text-start flex-wrap col-12 col-lg-10 col-xxl-8 mx-auto"> <div class="pe-lg-2 px-2 px-lg-0 col-12 col-lg-4 d-flex align-self-stretch"> <div class="platformOrphanews p-3 flex-column justify-content-between d-flex"> <img class="mb-4" width="210px" alt="Logo Orphanews" src="/build/images/logo-orphanews.png"> <p class="mb-4"> OrphaNews est une lettre d鈥檌nformation 茅lectronique bimensuelle et gratuite, destin茅e 脿 la communaut茅 des maladies rares. Elle pr茅sente un aper莽u des actualit茅s scientifiques et politiques sur les maladies rares et les m茅dicaments orphelins. </p> <p> <a class="px-2 py-1" href="https://france.orphanews.org/archives.html" title="Lire la derni猫re newsletter" target="_blank">Lire la derni猫re newsletter </a> </p> </div> </div> <div class="pe-lg-2 py-2 py-lg-0 px-2 px-lg-0 col-12 col-lg-4 d-flex align-self-stretch"> <div class="platformOrphadata p-3 flex-column justify-content-between d-flex"> <img class="mb-4" width="210px" alt="https://france.orphanews.org/archives.html" src="/build/images/logo-orphadata.png"> <p class="mb-4"> La plateforme Orphadata fournit 脿 la communaut茅 scientifique des jeux de donn茅es complets et, de grande qualit茅 sur les maladies rares et les m茅dicaments orphelins, dans un format informatis茅 et r茅utilisable. </p> <p> <a href="//www.orphadata.com/" target="_blank" title="Acc茅der 脿 Orphadata" class="px-2 py-1">Acc茅der 脿 Orphadata </a> </p> </div> </div> <div class="col-12 px-2 px-lg-0 col-lg-4 d-flex align-self-stretch"> <div class="platformOrdo p-3 flex-column justify-content-between d-flex"> <img class="mb-4" height="35px" width="80px" alt="Logo Ordo" src="/build/images/logo-ordo.png"> <p class="mb-4"> L鈥橭ntologie Orphanet des maladies rares (ORDO) est un vocabulaire structur茅 pour les maladies rares, d茅riv茅 de la base de donn茅es Orphanet, montrant les relations entre les diff茅rentes maladies, les g猫nes et d鈥檃utres caract茅ristiques pertinentes. Elle fournit des donn茅es int茅gr茅es et r茅utilisables dans le cadre d鈥檃nalyses computationnelles. </p> <p> <a href="//www.orphadata.com/ontologies/" target="_blank" title="Acc茅der 脿 ORDO" class="px-2 py-1">Acc茅der 脿 ORDO </a> </p> </div> </div> </div> <div class="mx-auto min-vh-40 col-xxl-6 col-lg-8 col-12 col-md-10 bg-white"></div> </div> <div class="bg-white col-xxl-6 col-lg-8 col-md-10 mx-auto pb-4"> <h2 class="py-5">Contribuez 脿 Orphanet</h2> <p class="col-lg-6 col-md-10 mx-auto">Orphanet travaille avec la communaut茅 des maladies rares afin de fournir 脿 ses utilisateurs une information actualis茅e et de qualit茅 sur les maladies rares et d'am茅liorer ses services.</p> <!-- TODO : Cr茅er Section des pages Rapports th茅matiques pour brancher ces liens --> <div class="targetsContribute d-flex flex-wrap justify-content-around"> <div class="col-12 d-flex flex-column align-items-center justify-content-around col-sm-6 col-lg-4 expert p-3"> <img alt="Experts scientifiques" src="/build/images/picto-experts.png" width="140"> <h3 class="mt-3 mb-2">Expertise</h3> <p>Contribuez aux donn茅es scientifiques d鈥橭rphanet et transmettez-nous vos commentaires en utilisant notre plateforme de curation communautaire et interactive destin茅e aux experts.</p> <a class="btn-blue" href="/fr/institutions/get-in-touch/contact/29" title="Contribuer">Contribuer</a> </div> <div class="col-12 d-flex flex-column align-items-center justify-content-around col-sm-6 col-lg-4 professional p-3"> <img alt="Professionnels du champs maladies rares" src="/build/images/picto-registration.png" width="140"> <h3 class="mt-3 mb-2">Enregistrement</h3> <p>Am茅liorez la visibilit茅 de vos activit茅s li茅es aux maladies rares en les enregistrant sur Orphanet.</p> <a class="btn-blue" href="/fr/institutions/get-in-touch/register-update-activity" title="Enregister votre activit茅">Enregister votre activit茅</a> </div> <div class="col-12 d-flex flex-column align-items-center justify-content-around col-lg-4 sponsors p-3"> <img alt="Parrainage" src="/build/images/picto-sponsors.png" width="140"> <h3 class="mt-3 mb-2">Parrainage</h3> <p>脡tablissez un partenariat avec Orphanet et soutenez-nous dans notre mission d鈥檃m茅lioration de la connaissance et de l'information sur les maladies rares.</p> <a class="btn-blue" href="//www.orpha.net/orphacom/special/Sponsoriser_Orphanet.pdf" target="_blank" title="Nous parrainer">Nous parrainer</a> </div> </div> </div> <div class="cahierOrphanet col-12 col-md-10 col-xxl-8 my-5 mx-auto"> <h2 class="mt-3 pt-5 pb-4">Les Cahiers d'Orphanet</h2> <div class="mx-auto d-flex flex-column flex-md-row-reverse col-md-11 justify-content-center"> <div class="col-12 mx-auto col-md-2 col-lg-2 px-3 d-flex justify-content-center"> <img class="pb-4" alt="Dernier cahier d'Orphanet" src="/build/images/couv-cahier.jpg"> </div> <div class="col-12 col-md-8 col-lg-8 px-3"> <p class="text-start"> Orphanet produit des s茅ries de cahiers, dont la fr茅quence de t茅l茅chargement est 茅lev茅e, qui pr茅sentent des donn茅es agr茅g茅es et relatives aux maladies rares. Ces s茅ries incluent une liste des maladies rares, des rapports sur des donn茅es 茅pid茅miologiques, une liste des m茅dicaments orphelins, des registres sur les maladies rares en Europe, une liste des infrastructures de recherche utiles aux maladies rares en Europe, le rapport d鈥檃ctivit茅 annuel d鈥橭rphanet et des enqu锚tes de satisfaction sur Orphanet, ainsi que la liste des experts ayant contribu茅 aux donn茅es d鈥橭rphanet. </p> <p class="text-start mt-4 mb-5"> <a class="py-1 px-2" href="/fr/other-information/reports" title="Consulter les cahiers">Consulter les cahiers</a> </p> </div> </div> </div> <div class="col-12 col-md-10 col-lg-8 col-xxl-6 flex-column flex-md-row other-diseases-procedure d-flex p-4 p-lg-0 py-lg-4 text-start bg-white mx-auto"> <div class="col-md-6 col-12"> <h3 class="col-md-8 col-10 mx-md-auto">Proc茅dures d'Orphanet</h3> <ul class="list-unstyled col-lg-6 ms-5 mx-lg-auto"> <li> <a href="/fr/other-information/procedures" title="Orphanet produit ses donn茅es selon des proc茅dures 茅tablies et publi茅es">Orphanet produit ses donn茅es selon des proc茅dures 茅tablies et publi茅es</a> </li> </ul> </div> <div class="col-md-6 col-12"> <h3 class="col-md-8 col-10 mx-md-auto">Autres sites internet sur les maladies rares</h3> <ul class="list-unstyled col-lg-6 ms-5 mx-lg-auto"> <li><a href="//ec.europa.eu/health/non_communicable_diseases/rare_diseases_en" title="Rare Diseases - European Commission">Rare Diseases - European Commission</a> </li> <li><a href="//www.rd-action.eu/" title="RD-Action">RD-Action</a> </li> <li><a href="//www.ema.europa.eu/en/human-regulatory/overview/orphan-designation" title="European Medicines Agency">European Medicines Agency</a> </li> <li><a href="//www.irdirc.org/" title="IRDiRC">IRDiRC</a> </li> <li><a href="//rarediseases.info.nih.gov/" title="Office of rare diseases research (US)">Office of rare diseases research (US)</a> </li> <li><a href="//ec.europa.eu/health/ern_en" title="R茅seaux europ茅ens de r茅f茅rence">R茅seaux europ茅ens de r茅f茅rence</a> </li> <li><a href="//ojrd.biomedcentral.com/" title="OJRD">OJRD</a> </li> <li><a href="//solidarites-sante.gouv.fr/soins-et-maladies/prises-en-charge-specialisees/maladies-rares/article/les-maladies-rares" title="Maladies Rares - Minist猫re des Solidarit茅s et de la Sant茅">Maladies Rares - Minist猫re des Solidarit茅s et de la Sant茅</a> </li> <li><a href="//solidarites-sante.gouv.fr/IMG/pdf/pnmr_3_v25-09pdf.pdf" title="Plan national maladies rares">Plan national maladies rares</a> </li> <li><a href="//www.plateforme-maladiesrares.org/" title="Plateforme Maladies Rares">Plateforme Maladies Rares</a> </li> </ul> </div> </div> <div class="mx-auto events col-10 col-lg-8 col-xxl-6"> <h2 class="p-5 text-black">脡v茅nements</h2> <div class="d-flex flex-wrap justify-content-around"> <div class="row col-12 mb-2 col-md-4"> <div class="bg-white p-2 col-4 align-self-start m-2"> <p><span class="fs-5">juin</span></p> <strong class="fs-3">19-20</strong> </div> <div class="col-7 text-start"> <h3 class="fs-6"> <a href="https://www.filnemus.fr/les-formations/formation-filnemus/atelier-euro-mediterranee-des-pathologies-neuromusculaires-edition-2025" target="_blank" title="Atelier Euro-M茅diterran茅e des pathologies neuromusculaires">Atelier Euro-M茅diterran茅e des pathologies neuromusculaires</a> </h3> <p><i class="bi bi-geo-alt-fill fs-4 green"></i>Marseille, France</p> </div> </div> <div class="row col-12 mb-2 col-md-4"> <div class="bg-white p-2 col-4 align-self-start m-2"> <p><span class="fs-5">octobre</span></p> <strong class="fs-3">7-8</strong> </div> <div class="col-7 text-start"> <h3 class="fs-6"> <a href="https://rareparis.com/" target="_blank" title="Rencontres RARE 2025">Rencontres RARE 2025</a> </h3> <p><i class="bi bi-geo-alt-fill fs-4 green"></i>Paris, France</p> </div> </div> <div class="row col-12 mb-2 col-md-4"> <div class="bg-white p-2 col-4 align-self-start m-2"> <p><span class="fs-5">mai 2025</span></p> <strong class="fs-3">15</strong> </div> <div class="col-7 text-start"> <h3 class="fs-6"> <a href="https://fondation-maladiesrares.org/evenement/colloque-scientifique-2025/" target="_blank" title="Colloque scientifique de la Fondation Maladies Rares">Colloque scientifique de la Fondation Maladies Rares</a> </h3> <p><i class="bi bi-geo-alt-fill fs-4 green"></i>Paris, France</p> </div> </div> </div> <a class="btn-blue mt-4" href="//france.orphanews.org/archives.html#Colloques" target="_blank" title="Voir tous les 茅v猫nements">Voir tous les 茅v猫nements</a> </div> <div class="figure text-white col-12 mt-5"> <h2 class="text-white m-5">Orphanet en chiffres</h2> <ul class="list-unstyled d-flex flex-wrap mx-auto justify-content-around col-12 col-lg-10 col-xl-8"> <li class="d-flex flex-column align-items-center mb-4 col-6 col-sm-auto"> <i class="fas mb-4 fs-1 fa-disease icon"></i> <strong class="fs-4">6417</strong> Maladies <p> <a href="//www.ncbi.nlm.nih.gov/pubmed/31527858" target="_blank"> <i class="fas fa-external-link-alt text-white"></i> </a> </p> </li> <li class="d-flex flex-column align-items-center mb-4 col-6 col-sm-auto"> <i class="fas mb-4 fs-1 fa-dna"></i> <strong class="fs-4">4462</strong> G猫nes </li> <li class="d-flex flex-column align-items-center mb-4 col-6 col-sm-auto"> <i class="fas mb-4 fs-1 fa-hospital-alt"></i> <strong class="fs-4">8722</strong> Centres experts </li> <li class="d-flex flex-column align-items-center mb-4 col-6 col-sm-auto"> <i class="fas mb-4 fs-1 fa-vial"></i> <strong class="fs-4">36595</strong> Tests diagnostiques </li> <li class="d-flex flex-column align-items-center mb-4 col-6 col-sm-auto"> <i class="fas mb-4 fs-1 fa-user-md"></i> <strong class="fs-4">30456</strong> Professionnels </li> <li class="d-flex flex-column align-items-center mb-4 col-6 col-sm-auto"> <i class="fas mb-4 fs-1 fa-globe"></i> <strong class="fs-4">2.8 M</strong> Pages vues par mois </li> </ul> </div> </div> </article> <div class="modal" id="modal-survey-modal" tabindex="-1"> <div class="modal-dialog modal-dialog-centered modal-xl"> <div class="modal-content border-danger"> <div class="modal-header"> <h6 class="modal-title fw-bold">ENQUETE DE SATISFACTION 2025 DES UTILISATEURS D'ORPHANET</h6> <button id="close-survey" type="button" class="btn btn-danger" data-bs-dismiss="modal" aria-label="Close" data-id="2025"> <i class="bi bi-x"></i> </button> </div> <div class="modal-body"> Cher utilisateur d'Orphanet,<br/> Votre opinion est capitale pour am茅liorer les services que nous vous proposons. Votre contribution est 茅galement indispensable pour remplir nos obligations aupr猫s des institutions qui nous financent.<br/> Pourriez-vous nous accorder 5 脿 10 minutes de votre temps pour r茅pondre aux questions suivantes ? </div> <div class="modal-footer"> <a class="btn btn-primary text-decoration-none" target="_blank" href="https://ec.europa.eu/eusurvey/runner/OrphanetSatisfactionSurvey_FR"> R茅pondre 脿 l'enqu锚te </a> </div> </div> </div> </div> </main> <script src="/build/runtime.f3575a88.js" defer></script><script src="/build/755.5a8586e9.js" defer></script><script src="/build/673.f47275b8.js" defer></script><script src="/build/467.7cd7293e.js" defer></script><script src="/build/app.995367b8.js" defer></script> </body> <footer> <section class="partners bg-white my-3 d-print-none"> <h3 class="fs-5 text-center orpha-blue fw-bold">Avec le soutien de</h3> <div class="row col-lg-10 mx-auto my-4"> <ul class="list-unstyled d-inline-flex col-12 col-lg-6 flex-wrap justify-content-evenly align-items-center border-blue"> <li class="d-inline"> <a title="Site Internet de l'Inserm" href="//www.inserm.fr/" target="_blank"> <img src="/build/images/partners/logo-inserm.png" height="20px" alt="Site Internet de l'Inserm"> </a> </li> <li class="d-inline"> <a title="Link to the French Ministry of Health" href="//www.sante.gouv.fr/" target="_blank"> <img src="/build/images/partners/logo-sante_jeunesse_sports.png" alt="Link to the French Ministry of Health"> </a> </li> <li class="d-inline"> <a title="Link to CEE website" href="//health.ec.europa.eu/rare-diseases-and-european-reference-networks/rare-diseases_en" target="_blank"> <img src="/build/images/partners/logo-CEE_RDPortal.jpg" alt="Link to CEE website"> </a> </li> </ul> <ul class="list-unstyled d-inline-flex col-12 col-lg-6 flex-wrap justify-content-evenly align-items-center"> <li class="d-inline"> <a title="Site Internet de l'AFM" href="//www.afm-telethon.fr" target="_blank"> <img src="/build/images/partners/logo-AFM.jpg" alt="Site Internet de l'AFM"> </a> </li> <li class="d-inline"> <a title="Site Internet de Groupama" href="//www.fondation-groupama.com" target="_blank"> <img style="width:105px;" src="/build/images/partners/groupama.jpg" alt="Site Internet de Groupama"></a> </li> <li class="d-inline"> <a title="Institut fran莽ais de Bioinformatique" href="//www.france-bioinformatique.fr/?q=fr/orphanet" target="_blank"> <img src="/build/images/partners/Institut-Francais-de-Bioinformatique-IFB-petit.png" alt="Institut fran莽ais de Bioinformatique"> </a> </li> </ul> <h3 class="fs-5 text-center orpha-blue fw-bold">Orphanet est reconnu par</h3> <div class="row col-lg-10 mx-auto my-4"> <ul class="list-unstyled d-inline-flex col-12 flex-wrap justify-content-center align-items-center"> <li class="d-inline me-4"> <a title="information sur le label IRDiRC" href="//www.irdirc.org/activities/irdirc-recognized-resources/" target="_blank"> <img src="/build/images/partners/IRDIRC_logo3-Recomm-Recogn.jpg" alt="information sur le label IRDiRC"> </a> </li> <li class="d-inline me-4"> <a title="HVP Logo" > <img src="/build/images/partners/HVP_Logo.png" alt="HVP Logo"> </a> </li> <li class="d-inline"> <a title="GA4GH Logo" href="//www.ga4gh.org/" target="_blank"> <img src="/build/images/partners/GA_logo_100px.png" alt="GA4GH Logo"> </a> </li> </ul> </div> <h3 class="fs-5 text-center orpha-blue fw-bold">Orphadata Science est reconnu comme</h3> <div class="row col-lg-10 mx-auto my-4"> <ul class="list-unstyled d-inline-flex col-12 flex-wrap justify-content-center align-items-center"> <li class="d-inline me-4"> <a title="ELIXIR Core Resource Logo" href="//www.elixir-europe.org/platforms/data/core-data-resources" target="_blank"> <img src="/build/images/partners/Logo_CDR-mini.png" alt="ELIXIR Core Resource Logo"> </a> </li> <li class="d-inline"> <a title="Site Internet de globalbiodata" href="https://globalbiodata.org/what-we-do/global-core-biodata-resources/" target="_blank"> <img src="/build/images/partners/gcbr-logo.jpg" alt="Site Internet de globalbiodata"> </a> </li> </ul> </div> </div> </section> <div class="row fs-8 col-lg-7 mx-auto pb-4 pt-2 d-print-none"> <div class="col-10 offset-1 p-0 offset-lg-0 col-sm-6 col-lg-4"> <p>Notre site n'accueille aucune publicit茅<br>La pr茅sence de partenaires n'influence pas la politique 茅ditoriale</p> <p> 漏 everythingpossible / Fotolia <br/> 漏 Orphanet version 1.1.10 - 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