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Orphanet : Patient organisations
<!DOCTYPE html> <html lang="en"> <head> <script src="https://tarteaucitron.io/load.js?domain=www.orpha.net&uuid=bf83258dd5f3bc0f8040bc1a95eedc2ec3ca1a62"></script> <meta charset="UTF-8"> <meta name="viewport" content="width=device-width, initial-scale=1"> <meta name="google-site-verification" content="9sM3zazZuWJ_PI134Dxgq_MqlUEWRYULwgLG7sAaZ4w" > <title>Orphanet : Patient organisations</title> <link rel="shortcut icon" href="/build/images/favicon.png" type="image/png" /> <script async src="https://www.googletagmanager.com/gtag/js?id=G-VY3XS4G203"></script> <script> window.dataLayer = window.dataLayer || []; function gtag(){dataLayer.push(arguments);} gtag('js', new Date()); gtag('config', 'G-VY3XS4G203'); </script> <link rel="stylesheet" href="/build/app.c889ea47.css"> </head> <body> <header class="menu d-print-none"> <div class="fixed-top container-fluid d-flex justify-content-between p-0"> <nav> <a href="#menu" class="d-inline-block h-100"> <div class="burger-button closed h-100 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</div> </div> </header> <article class="row gx-0 gb-2"> <div class="col-xxl-9 col-lg-11 col-11 mx-auto service-wrapper pb-5"> <header class="row g-0 mb-4"> <aside class="d-none d-sm-none d-lg-block col-2"> <div class="h-100 w-100 d-flex flex-column justify-content-evenly text-center service-card py-4 px-2"> <span class="icon-container"><i class="fas fa-users fa-3x"></i></span> <span>Patient organisations</span> </div> </aside> <div class="col-10"> <div class="h-100 w-100 d-flex flex-column justify-content-evenly ps-4 mt-4 mt-md-0 d-print-none"> <span class="my-sm-3 icon-container"><a href="/">Homepage</a> > <a href="/en/patient-organisations">Patient organisations</a> > <strong><a href="/en/patient-organisations/federations-alliances">Federations/Alliances</a></strong></span> <h2>Search for a federation/alliance</h2> </div> </div> </header> <main class="row g-0"> <nav class="d-none d-sm-none d-lg-block col-2"> <ul class="list-unstyled"> <li class=""><a target="_self" href=/en/patient-organisations> Patient organisation</a></li> <li class="current"><a target="_self" href=/en/patient-organisations/federations-alliances> Federations/Alliances</a></li> <li class=""><a target="_self" href=/en/patient-organisations/helplines> Helplines for personal queries</a></li> <li class=""><a target="_self" href=/en/other-information/procedures> Sources/procedures</a></li> <li class=""><a target="_self" href=/en/other-information/reports> Orphanet Reports series</a></li> <li><a target="_blank" href=//www.orphadata.com/> Download Dataset</a></li> </ul> </nav> <div class="col-sm-12 col-md-10 col-lg-10 col-xl-10"> <fieldset class="service-color-box align-self-start mx-4 p-3 d-print-none"> <form name="federations_alliances_diseases_search" method="post" action="/en/patient-organisations/federations-alliances"> <div class="row"> <span class="dark-red col-12 col-xl-10 col-md-9 text-end">*</span> <div class="col-12 col-xl-10 col-md-9 mb-2"> <div> <input type="text" id="federations_alliances_diseases_search_name" name="federations_alliances_diseases_search[name]" required="required" placeholder="Disease name" class="js-autocomplete form-control" data-autocomplete-url="/en/disease/autocomplete/classifications_ascendants_search_en" /> <small class="dark-red"> (*) mandatory field </small> </div> </div> <div class="col-12 col-xl-2 col-md-3"> <button type="submit" id="federations_alliances_diseases_search_search" name="federations_alliances_diseases_search[search]" class="btn-primary btn">Search</button> </div> </div> <div class="row mt-2 mb-1"> <div class="col-12 col-md-6"> <select id="federations_alliances_diseases_search_country" name="federations_alliances_diseases_search[country]" class="form-control form-select"><option value="">All countries</option><option value="AUSTRIA">Austria</option><option value="BELGIUM">Belgium</option><option value="BULGARIA">Bulgaria</option><option value="CANADA">Canada</option><option value="CROATIA">Croatia</option><option value="CYPRUS">Cyprus</option><option value="DENMARK">Denmark</option><option value="FINLAND">Finland</option><option value="FRANCE">France</option><option value="GERMANY">Germany</option><option value="GREECE">Greece</option><option value="HUNGARY">Hungary</option><option value="IRAN, ISLAMIC REPUBLIC OF">Iran, Islamic Republic Of</option><option value="IRELAND">Ireland</option><option value="ITALY">Italy</option><option value="JAPAN">Japan</option><option value="LATVIA">Latvia</option><option value="LUXEMBOURG">Luxembourg</option><option value="MEXICO">Mexico</option><option value="MOROCCO">Morocco</option><option value="NETHERLANDS">Netherlands</option><option value="NORWAY">Norway</option><option value="POLAND">Poland</option><option value="PORTUGAL">Portugal</option><option value="ROMANIA">Romania</option><option value="SERBIEN">Serbien</option><option value="SLOVAKIA">Slovakia</option><option value="SPAIN">Spain</option><option value="SWEDEN">Sweden</option><option value="SWITZERLAND">Switzerland</option><option value="UNITED KINGDOM">United Kingdom</option><option value="UNITED STATES">United States</option></select> </div> </div> </form> <div class="more-options transition float-md-end float-sm-start"> <label class="fw-bold service-color"> Other search option(s) <span class="up d-none"><i class="fas fa-caret-up"></i></span> <span class="down"><i class="fas fa-caret-up fa-rotate-180"></i></span> </label> <ul class="list-unstyled opacity-0" aria-expanded="false"> <li> <span class="service-color"><i class="fas fa-chevron-right"></i></span> <a href="/en/patient-organisations/federations-alliances-name">Search federation/alliance name</a> </li> </ul> </div> </fieldset> <div class="row g-0 mt-5"> <div class="col-12"> <div class="help px-4 mt-1"> <div class="offset-0 col-12 offset-lg-1 col-lg-10 mb-5 mt-4 mt-sm-0"> <h3>Help</h3> <p>Orphanet provides information on national, European or international alliances and federations dedicated to one particular rare disease or to a group of rare diseases. The information displayed is the information concerning the coordinator of the alliance/federation and affiliated patient organisations. </p> <p class="fw-bold">Enter your requested disease name to access this information. </p> <p>The results can be sorted either geographically (by country, region and city, in alphabetical order), or by specificity (from those more focused on a particular disease to those specialised in a group of diseases including the disease you were looking for). </p> <p>You can access related Orphanet datasets in an aggregated format through <a target="" _blank'="" href="//www.orphadata.com/">Orphadata</a> after signature of a Data Transfer Agreement/Service Contract. </p> </div> <div class="warning p-5 mb-5"> <h4><i class="fas fa-sm fa-exclamation-triangle"></i> Warning</h4> <p>Alliances and federations should be active, responsive, provide support and information to patients, have a legal status according to the country鈥檚 laws and have a designated head and /or a contact person. </p> <p>Orphanet cannot be held responsible for harmful, truncated or erroneous use of any information found in the Orphanet database. </p> </div> </div> </div> </div> </div> </main> </div> </article> </article> </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.f38c68b0.js" defer></script> <script src="/build/dropdown.3479635d.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">With the support of</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" 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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 is recognised as</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 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