Select your organisation —Please choose an option— 'Victor Babes' University of Medicine and Pharmacy, Timișoara "SOURCE" Foundation #BastaPoco #RareDisease #gyncsm Community 2nd junior high school of Ioannina for Intercultural Education 2nd Primary School of Nea Erythraia 3billion 4th Primary School of Pefkis 51° Stormo - Istrana (TV) Aeronautica Militare 53Biologics 7 Cups 8th Primary School of Nea Filadelfeia 95, Rare Alliance Greece A-T Children’s Project Canada A.I.D. - Kartagener Onlus A.I.L.U. - Associazione Italiana Leucodistrofie Unite e Malattie Rare A.Ma.R.A.M. Associazione Malattie Rare dell'Alta Murgia ONLUS A.R.I.S. (Associazione Retinopatici ed Ipovedenti Siciliani) A.S.C.O - Tecnológico de Monterrey AADMD UMFCD Bucharest Chapter AAGAMA Consulting Group AAME - Amigos da Atrofia Muscular Espinhal AANS UNAM Medical Student Chapter Aaron's Ohtahara Foundation ABC CRI DU CHAT Abeer Medical Group Abeona Therapeutics ABLD Abralinfe - Associação Brasileira de Pessoas com Linfedema e Familiares Abrami - Associação Brasileira de Miastenia ABRAPompe – Associação Brasileira dos Parentes, Amigos & Pacientes de Pompe Academic League on Medical Genetics Acción y Cura para Tay-Sachs - ACTAYS Achieve Pediatric Therapy and Rehab ACHSE e. V. Allianz Chronischer Seltener Erkrankungen Acıbadem Üniversitesi Nadir Hastalıklar Günü Sempozyumu ACMT-Rete per la malattia di Charcot-Marie-Tooth OdV Acorn Analytical Services (UK) Ltd Action Duchenne Action for A-T Actitud Dravet Argentina ACURARE-Acibadem University Rare Diseases and Orphan Drugs Application and Research Center ADAIDF(Asociación de Ayuda e Integración para las Personas con Diversidad Funcional) ADAIF Adapte Educação Adcum - association of urea and metabolic cycle disorders Peru Addapters Addison's Disease Self Help Group Adenomyosis Advice Association Adisen - Asociación Nacional de Addison y Otras enfermedades Endocrinas admedicum admedicum Business for Patients admedicum GmbH & Co KG Advanced Clinical Adventuresinlove4Andie Advocacy & Awareness for Immune Disorders Association (AAIDA) Advocacy for Neuroacanthocytosis Patients AEPEF (la Asociación Española de Paraparesia Espástica Familiar) Aesar (Axenfeld Rieger Syndrome AFAG (Associação dos Familiares, Amigos e Portadores de Doenças Graves) AFASCOL AFASW - ALIANZA DE FAMILIAS AFECTADAS POR EL SÍNDROME DE WOLFRAM AFECE Associação Franciscana de Educação ao Cidadão Especial AFG (Association Francophone des Glycogénoses) Aga Khan University Against All O.D.D.S. (Orphan Disease Defender Society) Agios Pharmaceuticals Ågrenska AHC18+ e. V. AHEDYSIA AIAF APS - Associazione Italiana Anderson-Fabry Aicardi Goutieres Syndrome Advocacy Association (AGSAA) Aidel22 AILE ONLUS Aiomix AIRCS ODV AIRM - Italian Association for Mitochondrial Research AISA LIGURIA ONLUS Associazione italiana per la lotta alle Sindromi Atassiche AISAC Onlus AISMAC AISMME Associazione Italiana Sostegno Malattie metaboliche Ereditarie Aps AISNAF onlus AKABE (ASSOCIATION KABUKI BELGIUM) Al Jalila Children's Speciality Hospital Al-Jawhara Centre/ Arabian Gulf University Alabama Rare ALAMERA ALAN - Maladies Rares Luxembourg Alanya Özel Eğitim Anaokulu ALAPA Enfermedades Mitocondriales Argentina ALCIMED ALER Asociación Leonesa de Enfermedades Raras y sin diagnóstico Alex TLC Alexandria University Alexion Pharma Spain Alexion Pharmaceuticals Alexion Spain & Portugal Alfie Milne Lymphangiomatosis Trust ALI KIMARA RARE DISEASE FOUNDATION Ali Kimara Rare Disease Foundation - AKRDF Aliança Brasileira de Genética - ABG Alianza Argentina de Pacientes - ALAPA ALIANZA ESPAÑOLA DE FAMILIAS DE VON HIPPEL-LINDAU ALIANZA IBEROAMERICANA DE ENFERMEDADES RARAS O POCO FRECUENTES Alianza Mexicana de Familias con Von Hippel Lindau, A.C. Alira Health AllheART Alliance Algérienne contre les Maladies Rares Alliance des Maladies Rares au Maroc Alliance for Cryoglobulinemia Alliance for rare diseases of Republic of Srpska, Bosnia and Herzegovina Alliance Maladies Rares Alliance Tunisienne des Maladies Rares & Association la Recherche en Action & Association des jeunes chercheurs de l'IPT ALMOHA: Association de Lutte contre les Maladies rares, les maladies Orphelines et le Handicap en Afrique Alpha-1 Foundation Ireland Alpharmaxim Alternating Hemiplegia of Childhood (AHC UK) Ama Fuori dal Buio Amber Specialty Pharmacy Ambulatorio Di Genetica Medica del PO Vittorio Emanuele di Gela AMEI - Associazione Malattie Epatiche Infantili American Behcet’s Disease Association (ABDA) American College of Medical Genetics & Genomics American Medical Women's Association American Society for Parenteral and Enteral Nutrition (ASPEN) AMFMF (Association Marocaine de la fièvre méditerranéenne familiale et des autres fièvres récurrentes héréditaires) Amigos del Tourette Chile Amigos Metabolicos AMILO: Asociación Española de Amiloidosis AMMA Andorra Amour Fund Amri ONLUS Amy and Friends AnDDI-Rares ANDO Portugal Andrómeda Radio AngelmanUK Angels4Patients Angioma Alliance Anibas Design & Photography Aniridia Network Ankara University Rare Diseases Application and Research Center Annabelle's Challenge Vascular EDS Charity ANNAPAREDDY CHARITABLE TRUST ANSEDH Answers for Erin ANT Educational Medical and Social Welfare Development Trust Antwerp University Hospital and University of Antwerp AO Copiii Ploii AP-HP.Nord - Université de Paris APAFCLM Y ADEAPAF Aplastic Anemia & Myelodysplasia Association of Canada APMPS/DR Apple Homecare Medical Supply APRSW - associação paranaense de síndrome de Williams APW Italia Onlus Ara Paraseghian Medical Research Fund Arab Paediatric and Neonatal Medical Congress Arabic Organisation For Rare Diseases Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN) Arcoiris Onlus Arizona Carcinoid & Neuroendocrine Foundation, Inc. Armenian Hematology Association Army Against Leukodystrophy ARVC-Selbsthilfe e.V. As.Ma.Ra Onlus ASAFE Asamsi Onlus ASBL ABeFAO Asbl Chiara VDS ASCER Asociación Chihuahuense de Enfermedades Raras Ashua Asia Pacific Alliance of Rare Disease Organisations Asociación Argentina de Alopecia Autoinmune Asociación Argentina de XLH y otros raquitismos hereditarios Asociación Arteritis de Takayasu en España - ATaK Asociacion Colombiana de Pacientes con Enfermedades de Deposito Lisosomal (ACOPEL) Asociacion Costarricense para el Tamizaje y la Prevencion de Discapacidades en el Nino Asociación de Alumnos, Exalumnos y Egresados del Doctorado en Genética Humana de la Universidad de Guadalajara, A. C. (AAEEDGH) Asociación de Enfermedades Raras de Castilla y León Asociación de Esclerodermia Castellón ASOCIACIÓN DE LUCHA CONTRA LA DISTONIA EN ARAGÓ (ALDA) Asociación de Pacientes con Angioedema Hereditario del Peru Asociación Española de Aniridia ASOCIACIÓN ESPAÑOLA DE ESCLERODERMIA Asociación Española de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios Stop FMF Asociación Española para el Estudio de los Errores Congénitos del Metabolismo (AECOM) Asociación Gaucher de México Asociación Leonesa de Enfermedades raras Asociación Miastenia de España (AMES) Asociación Mucopolisacaridosis Argentina Asociación Nacional de Hipertensión Pulmonar Asociación Nacional Familias G.A. Asociación Nacional Síndrome Treacher Collins Liam Mx Asociacion para Todos - Unidos por la salud Asociación Paraguaya de Pacientes con Enfermedades Lisosomales APPEL Asociación Rett Guatemala Asociación Segundo Tiempo A2T Asociación Tejido Azul Asociación Todos Unidos Enfermedades Raras Uruguay ASOCIACIÓN VALENCIANA DE ENFERMEDAD DE HUNTINGTON Asociatia Andreas-Rares Asociaţia Cetatea Voluntarilor Asociația Gaucher România Asociația Marina Xenia Irene Asociatia Neurocare Asociatia pentru Huntington din Romania Asociația Prader-Willi București ASPEC - Associção de Paraparesias Espasticas Correlatas do Brasil Aspergillosis Trust ASPHER Aragón Aspire to Inspire ASPIRE: Alliance to Solve PANS & Immune-Related Encephalopathies ASrid Ass.ne MoliSiamo Mamme Associa-Med Tunisia (Tunisia Medical Students' Association) Associacao Brasileira de Enfermedades Raras Associação capixaba de Apoio às Pessoas com Doenças Raras Associação de Apoio aos Pacientes e Familiares de Trombocitopenia Imune PTI BRASIL Associação Kokua, cães de ajuda social Associação Portuguesa de Neurofibromatose, APNF Associação regional de esclerose lateral amiotrófica Associação Regional de Esclerose Lateral Amiotrofica de Minas Gerais ASSOCIAÇÃO SERGIPANA DE PESSOAS COM DOENÇAS RARAS Associació de malalties minoritaries d’Andorra (AMMA) Association ADEM des Maladies Rares Association AGM Association AHC18+ und Kooperationspartner Association Algerienne du Syndrome de Williams et Beuren Association Amms france Association Anna Association Aux Pas Du Coeur Association Belge du Syndrome de Marfan Association Bernard Pépin pour la Maladie de Wilson (ABPWilson) Association Espoir Vaincre les Maladies Lysosomales au Maroc Association for Glycogen Storage Disease Association for patients Rett syndrome Association for rare diseases Republic of Srpska Association for the Wellbeing of Children in Healthcare (AWCH) Association Fragile X France ASSOCIATION FRANCAISE DE L'ATRÉSIE DE L'ŒSOPHAGE Association Guerrier Mitochondrial ( AGM) Association Humanitaire contre les Maladies Association Ichtyose France Association IRIS Association marocaine des maladies auto-immunes et systémiques (AMMAIS) Association Neurofibroma-Togo Association Nigérienne de l’hémophilie Association of Citizens for Rare Diseases "Life With Challenges" ASSOCIATION OF INHERITED METABOLIC DISEASES 'ASPIDA ZOIS', CYPRUS Association of Patients with Blood Diseases Slovenia - DRUŠTVO BOLNIKOV S KRVNIMI BOLEZNIMI SLOVENIJA Association of Rural Family Doctors of Latvia Association of Support to Patients with Orphan Diseases in the Republic of Kazakhstan Association pour la Sensibilisation aux Maladies Rares, Orphelines et Auto-immunes à Saint-Pierre et Miquelon ASSOCIATION PRUNE BELLY SENEGAL Association Rebeca Faith Hope Love Association Rett Syndrome Greece Association Shifa des Maladies NeuroMusculaires Association XY association ZOE Action Associazione Nazionale Sindrome di NOONAN e RASopatie ODV Associazione "Casa Famiglia Rosetta" Associazione Acromati Italiani Associazione Amici della Laguna e del Porto Associazione Casa Famiglia Rosetta Associazione del Lazio Sindrome X Fragile Associazione di Volontariato "Area Celsi" Associazione FEIMAR BAT ONLUS( Federazione Italiana Malati Rari della Bat) Associazione italiana Acondroplasia Insieme per Crescere Onlus Associazione italiana Adrenoleucodistrofia Associazione Italiana Malattie Neurologiche Rare (AIMNR) Associazione Italiana Niemann Pick e Malattie Affini - Onlus Associazione Italiana per l'Eteroplasia Ossea Progressiva Onlus Associazione Italiana Sindrome X Fragile Associazione Italiana Sindrome X-Fragile Associazione Linfa Odv Associazione Nazionale Atassia Telangiectasia Onlus Associazione Nazionale Italiana Sindrome di Mayer Rokitansky Kuster Hauser Associazione Nazionale Italiana Sindrome di Mayer Rokitansky Kuster Hauser Associazione Nazionale SINDROME di NOONAN e RASopatie ODV Associazione Persone Sindrome di Williams Italia - APWI Onlus Associazione Ponte Linari Associazione Sclerosi Tuberosa Associazione Sindrome Bardet Biedl Italia Associazione Sindrome di Alport Associazione Sindrome di Crisponi e Malattie Rare ASSOCIAZIONE SINDROME DI PRADER-WILLI EMILIA ROMAGNA Associazione Sindrome di Williams E. R. ASST Lariana Como Aston University Neuropsychology Laboratory Ataxia and me .org Ataxia and Me.org Ataxia Care Project Ataxia Support Group Cornwall Ataxia Telangiectasia National Association Atlants Health Atópicos Brasil ATXA Therapeutics Limited Auditivos Urquieta AUPA (United to help you) ausEE Inc. Australian Addison's Disease Association Inc. Australian NPC Disease Foundation Inc Australian Pompe Association Australian Sickle Cell Advocacy Inc Autoimmune Association Autoimmune Resource & Research Centre Autour des Williams Avery's Hope Avery's Hope Awareness raising for Neuromyelitis Optica (NMO) Ayoudas Panama Ayuntamiento de Agullent Ayuntamiento de Alanía Ayuntamiento de Arroyo de la Encomienda Ayuntamiento Móstoles Ayushkama Foundation Azienda Ospedaliera di Perugia Azzurra Associazione Malattie Rare Onlus Backpack Health Ball State University Banco Nacional de Panamá Barcelona Macula Foundation: Research for Vision BARE BARE Barth Syndrome Foundation of Canada Bartter syndrome foundation Başkent Üniversitesi Batten Disease Australia Batten Disease Support and Research Association Baylor College of Medicine BCM Families Foundation Be Limitless Beat SCAD BEATKAPS Beck-Fahrner Syndrome Foundation Bedrock Healthcare Communications Ltd Befemder Belgische Organisalie Voor Kinderen En Volwassenen Met Een Stofwisselingsziekte Beomed Translation Team - Network of Freelance Translators Best Friends Foundation BETM CONSULTANTS INC. Beyciler Mukaddes Sönmez Secondary School Bezmi̇alem Vaki̇f Üni̇versi̇tesi̇ Biameditek Sp. z o.o. Bin Adam Foundation Bind up Batten Fund in Beyond Batten Disease Foundation Bindweefsel.be - Vlaamse Vereniging voor Erfelijke Bindweefselaandoeningen vzw Biogenity BIOGENWEB Biomarin Biomedical Research Centre Guys and St Thomas NHS Foundation BioNanoNet Forschungsgesellschaft mbH BioNews, Inc. BiotchPharma and Health Services BiotchPharma and Health Services Turkey Birds for Sofia Foundation Birdshot Uveitis Society of North America Birdshot Uveitis Society of North America Birmingham Children's Hospital Biruni University Blind Early Services TN (BEST) Bloqcube BlueDil Boston Rare Connections Botswana Organisation for Rare Diseases (BORDIS) BPAN Warriors Brad Cohen Tourette Foundation British Paediatric Surveillance Unit Broad Institute of MIT and Harvard Bruin Allies for Duchenne Bulgarian Huntington Association Bulgarian Organisation of Voluntary Blood Donation Butterfly è Metamorphòsis, La Cultura per il Sociale A.P.S CADASIL Together We Have Hope Non-Profit Organization CAER 1% Cairo University Cajuns for a Cure Cal Poly Genetic Counseling Student Interest Group Cal State East Bay Concord Caligor Coghlan Pharma Services Cambridge BioMarketing Cambridge Rare Disease Network Camurus AB Canadian Association of Genetic Counsellors Canadian CdLS Foundation Canadian Fabry Association Canadian Immunodeficiencies Patient Organization (CIPO) Canadian Organization for Rare Disorders Cancer Warrior Team CannaCrawlersAtlanta Cardiff School of Optometry and Vision Sciences Care-for-Rare-Foundation Care4ASH1L Caring Hands Sarcoidosis Foundation CARING MATTERS NOW Carion Fenn Foundation Carlos Septién García School of Journalism Casa Famiglia Rosetta Casa Hunter Cassie + Friends Society Cátedra de Anatomía Patológica A-FO-UNC Cátedra de Anatomía Patológica A-FO-UNC Cavernöst Angiom Sverige (CASE) Cavernöst Angiom Sverige (CASE) Cayenne Wellness Center CBLC ONLUS CDH International CDH UK CDKL5 Alliance FRancophone CDKL5 Canada CDKL5 Insieme verso la Cura CDKL5 Research Collaborative/Kiera's Hope project CdLS Israeli Foundation CdLS האגודה הישראלית Cello Health Centenario Hospital Miguel Hidalgo Center for Human Genetics and Laboratory Diagnostics Center for Jewish Genetics Center for medical genetics and immunology of Clinical center of Montenegro Center for Neuroscience and Cell Biology University of Coimbra Center for Rare Diseases in Stockholm Center for Rare Diseases Research of the School of Medicine, New Vision University Centre de référence des maladies rares Centre for Health Ecologies and Technology Centre for Omic Sciences, Islamia College Centre for Personalised Immunology & Australian Phenomics Facility Centre for Rare Diseases, Dept. of Pediatrics, SMS Medical College, Jaipur Centre Hospitalier Cayenne Centre-Alliance Centres of Medical Genetics GENESIS Centro de Genética Médica Doutor Jacinto Magalhães - CHP Centro de Genomas Centro de Investigación en Anomalías Congénitas y Enfermedades Raras. CIACER Centro de Investigación en Genodermatosis y Epidermolisis Ampollar CENTRO DE REFERENCIA EPIDEMIOLOGICA DE MALFORMACIONES CONGENITAS Y ENFERMEDADES RARA Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias (Creer) Centro di Coordinamento MR FVG Centro di Coordinamento Regionale Malattie Rare Centro Internazionale di Studi e Formazione (C.I.S.eF.) "Germana Gaslini" Centro Malattie Rare Trento CENTRO METABÓLICO AVANZADO DE CANTABRIA Centro per la Tutela del Diritto Alla Salute degli Ammalati Ematologici ed Oncologici "Pablo Amato" O.D.V. Centrum för sällsynta diagnoser Sydöst Centrum för sällsynta diagnoser Uppsala Centrum för sällsynta diagnoser Väst Centrum Kultury i Sportu w Pruszczu Gdańskim Centrum Menselijke Erfelijkheid, KU Leuven/UZ Leuven Cetatea Voluntarilor Arad CF "Sister Dalila" Challenged Conquistadors, Inc. Champion Health Agency Change Team Africa CHARGE Syndrome Australasia Charitable Foundation "LA BEAUTY" Charitable Foundation"Sister Dalila", PHURDA Charity Foundation Nuzhna Pomoshch (Help Needed) Charlie's Garden Charlotte and Gwenyth Gray Foundation CHIESI Farmaceutici SpA Child & Youth Care, Zimbabwe Child Growth Foundation Child Hospital Agia Sofia, Athens Child Neurology Foundatoin Child's hope foundation Children in Distress Children's Hospital of Shanghai Childrens Joy Association China Alliance for Rare Disease (CHARD) Chinese Organization for Rare Disorders Chloes Fight Rare Disease Foundation CHNO des XV-XX Chronic and Rare disease foundation Chronic Illness Alliance CHUV, Lausanne University Hospital CIBERER CIDP Italia ONLUS Cincicnnati Center for Eosinophilic Disorders CIPF Centro de Investigación Príncipe Felipe CipherGene Citrin Foundation City of Warren CIUSSS du Saguenay-Lac-Saint-Jean / CORAMH CJD FOUNDATION Clinic for Special Children Clinic for Special Children Clinica Neurologica (AOU Maggiore della Carità Università del Piemonte Orientale) & Interdisciplinary Research Center Autoimmune Diseases Clínica PersonMed Clinical Research Unit at the Montreal Neurological Institute and Hospital Clinical Science Associate Panama CLTC Related Disorder Alliance CMID - Centro di Coordinamento Rete Interregionale per le Malattie Rare del Piemonte e della Valle d'Aosta CML Advocates Network CMT CMTC-OVM CMTC-OVM US CMTCanada (Charcot-Marie-Tooth) Coalición de Hipertensión Pulmonar Latinoamérica Coalition Duchenne Coffin-Lowry Syndrome ประเทศไทย Colegio Amor de Dios de Arévalo Colorado Springs Neurological Associates Comissão instaladora da nova organização agregadora de associações de doenças raras em Portugal Comitato I Malati Invisibili Comité de Asistencia Social y Proyección Humana y AYOUDAS Panamá, fundación en ayuda para niños de bajos ingresos y enfermedades raras Community Health Action Volunteers Community Heroes Community Heroes Comune di Gattatico Comune di Polignano a Mare COMUNE DI ZOLA PREDOSA Conectiva.Lat Congenica Congreso Enfermedades Raras y Drogas Huérfanas Congresso Nacional Brasileiro Conociendo a Hunter: Familia y Discapacidad Conselho Municipal de Saúde da Cidade de São Paulo Consiglio Regionale della Toscana Consortium of Independent Immunology Clinics, LLC Consultório de Genética Clínica Consumer and Researcher Engagement Central Clinical School Monash University Cook MyoSite Coordinamento Malattie Rare Regione Puglia Coordinamento Regionale Malattie Rare Coordinating Center for Rare Disorders of Kaunas Clinics (the Hospital of Lithuanian University for Health Sciences) Coordinating Centre of Pediatric rare diseases Coordination of Rare Diseases at Sanford, Sanford Research ÇORLU İMKB FEN LİSESİ CORONIS Research S.A. Corpo Bandistico Musicale Telgate 90 COST Action #CA18116 ANIRIDIA-NET CPT LECCE FONDAZIONE TELETHON Crain Family Foundation Crossing Connection Health CRS4 CSF (Chiari & Syringomyelia Foundation) CSF Leak Association CSL Behring CSL Plasma - Hazel Crest #116 CSNK2A1 Foundation CTI Clinical Trial and Consulting Services (USA) Cummins Area School Curant Health Cure AHC Cure For Claire West Midlands C.I.C. Cure MCOPS12 Cure Sanfilippo Foundation Cure Vitiligo CURED Foundation CureGRIN Foundation Cushing's Support & Research Foundation Cyagen Cycle Pharmaceuticals Cyprus Alliance for Rare Disorders (CARD) Cystinosis Research Network d.Jamal ahmad rashid Pediatrics Teaching Hospital Sulaimanyah Iraq D'Genes Dachverband Selbsthilfe Salzburg Dakshayani and Amaravati Health and Educ Danielle's Hope Dazzle4Rare DDX3X Foundation Deadly disease podcast DEBRA CZ Debra France Debra Italia Onlus Debra México debra of America (The Dystrophic Epidermolysis Bullosa Research Association of America) DEBRA Slovenia DEBRA UK Defeat Duchenne Canada DEGETHA e. V. Delaware HOSA den i asbl syndrome de Marfan Luxembourg Département Génie biologique ULT Department of Biological Sciences, Royal Holloway University of London Department of Genetic Engineering, SRM University Department Of Pediatrics, Civil Hospital Karachi and Professional Development Centre, Dow University Of Health Sciences Dhiti Omics Technologies digiD8 DIMED Medicine Department of the University of Padua Dipartimento di Medicina- DIMED Università degli Studi di Padova Dipartimento di Scienze Biomediche, Università di Padova Dipartimento Funzionale Malattie Rare, Azienda Ospedale Università di Padova (AOUP) Direccion de programas sanitarios Disability and Social Interaction Lab at Oregon State University DISAUTONOMÍA CHILE Discapacitados Otros Ciegos de España Disorder of the Corpus Callosum Hungary Foundation Distrito de Salud 04D02 DMD CARE ASSOCIATION DOCAS (District Outreach for Care and Support) DOCMED.ar Dott.ssa Ketty Perrotta Dr. Alnadi Clinic for Gastroenterology and Liver diseases Dra. Catalina Espina Rodas DRAVET ITALIA ONLUS Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet) Drexel College of Medicine drsanjaypedia Duchenne Kas Hastalığı ile Mücadele Derneği Duchenne UK Duke Consortium for Inflammatory Breast Cancer (IBC) Dup15q Australia Dúshlán Dynamicsoft Early intervention Association EB Haus Austria Eclas - Ensemble contre l'amyotrophie spinale de type 1 ECUSA EDS GUATEMALA EDS Lëtzebuerg asbl Educating Girls and Young Women for Development-EGYD Egyptian Group for Orphan Renal Diseases (EGORD) Egyptian society of medical genetics Ehlers-Danlos Support Group of Jacksonville Ehlers-Danlos Syndrome Canada Ehlers-Danlos Syndrome Vermont EINSTÖK BÖRN - Support Group for Children with Rare Disorders El Hospital Vall d'Hebron de Barcelona ELA ITALIA ONLUS Eleven Health Elia Durán Asesoría Elite Home Support Limited Elysium Neurological Emory Genetics Laboratory Empowerment for Sustainable Livelihood EmRaDi EMUVCO En Ruta por las Enfermedades Raras Enfermedades Raras Costa Rica enGenome Entrepreneurship and Innovation for Leber's Congenital Amaurosis (E&ILCA) Epilepsy Sparks ERN BOND European Reference Network on Rare Bone Diseases ERN eUROGEN ERN-ITHACA - Timisoara Center (Ro-NMCA-ID) esanum Esperantra pacientes como tú Estonian Agrenska Foundation European CMT Federation European Paediatric Translational Research Infrastructure (EPTRI) EURORDIS-Rare Diseases Europe Evox Therapeutics EwenLife Rare Diseases Exceptional Families of the Military Executive Insight Eyes on the Future F.Hoffmann-La Roche Ltd.Basel, Representative Office Tirana Fabry Australia Facial Pain Association Factor-H Facultad de Medicina de la universidad central Facultad de Medicina UAQ Facultad de Medicina, UABC Facultad de Medicina, Universidad Autónoma de Campeche Faculty of Biology, University of Warsaw Faculty of Medicine Istanbul Medeniyet University Faculty of Medicine Ramathibodi Hospital, Mahidol University Faedesfa ONLUS Fairleigh Dickinson University School of Pharmacy Industry Pharmacist Organization (USA) FAMILIAS AME PERÚ Family Friends and Duchenne Inc Family support group for rare diseases of Oman Fanconi Hope Farmacia Colussi SNC - Martignacco (UD) FAROMDER Solidaritätsverein der Seltenen autoinflammatorischen autoimmune- und rheumatischen Erkrankungen FAROMDER Nadir Ottoimün ve Romatizmal Hastaliklar Dayanisma Dernegi Faromder Soliraditätsverein der Seltene Autoinflammatorisch Autoimmun und Rheuma Erkrankungen FD Warriors and The FD Foundation FECAMM FECHER FECHER FEDERACION CHILENA DE ENFERMEDADES RARAS Federación Argentina de Enfermedades Poco Frecuentes - FADEPOF Federación Colombiana de Enfermedades Raras (FECOER) Federación de Enfermedades Poco Frecuentes Chile (FENPOF) FEDERACIÓN ESPAÑOLA DE ENFERMEDADES RARAS Federación Española de Fibrosis Quística Federación Internacional de Asociaciones de Estudiantes de Medicina de la Universidad Autónoma de Querétaro Federación Mexicana de Enfermedades Raras Federación Peruana De Enfermedades Raras (FEPER) Fédération Française de l'Atrésie et Microtie FEDRANN - FEDERAÇÃO DAS ASSOCIAÇÕES DE DOENÇAS RARAS DO NORTE NORDESTE E CENTRO OESTE FEMPA- Fundación de pacientes para pacientes con esclerosis múltiple de Bogotá FEVEPOF FEDERACION VENEZUELA FH Europe FibroFlutters & ZebraStrutters Fibromuscular Dysplasia Society of America Fibrous Dysplasia McCune Albright Syndrome Australia (FDMAS) Fight For Rare Disease, Inc Fight Like A Warrior FILFOIE, French network for RARE LIVER DISEASES Filière FAVA-Multi Filière Sensgene Filière TETECOU Filières de santé Fimatho et G2M Filières de Santé Maladies Rares FIMATHO Finally Clear Foundation, Inc Findacure Finnadvance FIORI DI CAMPO FIPAN (Asociación Argentina de Fibrosis Quística) Firefly Fund FIRENDO : French National Organisation for Rare Endocrine Diseases FITIMA Europe - Fondation International Tierno et Mariam FITIMA Guinée FLAIR FOR LIFE FOUNDATION FMF Ailevi Akdenız Ateşi ve Romatızmal Hastalıklar Dayanışma Dernegı FAROMDER - Germany Fondation Maladies Rares Fondation René Touraine - Genodermatose Network FONDAZIONE ALESSANDRA BISCEGLIA W ALE ONLUS Fondazione per la Ricerca Farmacologica Gianni Benzi Onnlus Fondazione Ricerca Fibrosi Cistica (FFC) Food St FOP Australia FOP Friends FOP ITALIA ONLUS Förderverein für Kinder mit seltenen Krankheiten Forge Biologics Form Bio Forum Campano delle Associazioni di Malattia Rara Forum Seltene Krankheiten FORUM TOSCANO ASSOCIAZIONI MALATTIE RARE aps Foundation for Epilepsy and Stigma Support (FESS-GAM) Foundation for Neuromuscular Support in Nigeria and Nigerian Red Cross Society, Unilag Detachment Foundation of Borys the Hero Foundation Orphanhealthcare FoxG1 Foundation Australia Frambu Friends of Abu El Rish CH Society - جمعية أصدقاء مستشفيات أبو الريش للأطفال Friends of FSH Research Fund Viljem Julijan - Eksena Society Fundación ALPE Acondroplasia Fundación AME Costa Rica Fundación de Hemisferectomia Fundacion Doblesonrisa Fundación Dravet Latam Fundacion Ecuatoriana de Pacientes con Enfermedades de Deposito Lisosomal Fundación El Baúl de Pinocho Fundacion FUPER Fundación GIST Fundación GIST Colombia Fundación Grupo de Apoyo A Todo Pulmón Fundación Grupo de Apoyo Hap Carabobo Fundación IMO Fundacion Lautaro Fundacion Lovexair Fundación María Laura FUNDACION MARIAMARTA FUNMART Fundación Mexicana de Prevención y Salud Materna Fundacion Mexicana de Prevención y Salud Materna A.C. Fundación Nacional Miastenia Gravis Ecuador Fundación Niños con DISAUTONOMIA Fundación Otras Miradas Fundación para la Prevención de la Discapacidad, Fundis Fundación Pasitos de Alegría and A STAR for Martina Fundación Red Sanfilippo Fundación Retina España Fundación RHYO Fundación Síndrome de Cantú Argentina Fundación Sjögren Argentina Fundación SPINE Fundación Taiyari compartir por la inclusión AC Fundación Vasculitis Chile Fundacion Vida Suenos y Esperanza Fundacja Sanfilippo Fundacja Saventic FUNEDERE - Fundación para el Estudio y Divulgación de las Enfermedades Raras en el Ecuador fupier FUPIER-Fundación GADS Global Aortic Disease Support GameChanger Charity Garage 10 Garrett the Grand - Batten Fighter Gaucher Community Alliance CIDP España - Polineuropatías|GBS | CIDP España - Polineuropatías GBS/CIDP Foundation of Canada GCAA GCT Gene People GENerando Esperanza Genes Latinoamérica A.C. 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Kennedy IDDRC The Superhero Project The Swedish National Agency for Rare Diseases (NFSD - Nationella Funktionen Sällsynta Diagnoser) The Whitworth Group The World of Rare Diseases THE WORLD OF RARE DISEASES - SPANIOS.GR The WWOX Foundation The Yaya Foundation for 4h Leukodystrophy Thrive with Pyruvate Kinase Deficiency Timothy Syndrome Alliance (TSA) Together Fighting Sarcoma Association Bulgaria Tom Wahlig Stiftung Jena Transform My Beauty Trazando lo Invisible TreatmentDiaries.com TRIPOLI CHILDREN HOSPITAL Trispera Consultancy Trispera Pharma Solutions TTPNetwork TTTS Support Team TUBB3 Foundation Tuberous Sclerosis Complex New Zealand Tulipán Tunisian scouts TUNSTALL Turkish Medical Genetics Association Türkiye Anne Çocuk Ergen Sağlığı Enstitüsü U.R. Our Hope U.S. Pain Foundation UAE Genetic Diseases Association UAE Rare Disease Society UC Davis Institue for Regenerative Cures Udruženje građana oboljelih od plućne hipertenzije #Dah" - u Bosni i Hercegovini UFS - Mental Health & Disability Support UILDM - Direzione Nazionale UILDM – Direzione Nazionale UK Renal Registry UMG Labs Un Filo per la Vita Onlus UN SOFFIO DI SPERANZA. IL SOGNO DI EMANUELA ONLUS Una Vida para Mateo, Asociación Española de Ayudar a Enfermos con Alteraciones en el Gen NEK8 UNC Catalyst for Rare Disease UNIAMO - FEDERAZIONE ITALIANA MALATTIE RARE Unidad de Diagnóstico de Enfermedades Raras UDER (Rare Diseases Diagnostic Unit) Unidad Docente de Medicina Familiar y Comunitaria United Arab Emirates Rare Disease Society United Porphyrias Association Universidad Autónoma de Guadalajara Universidad Autonoma de Queretaro Universidad Católica de Valencia Universidad de Cartagena Universidad de Murcia Universidade de São Paulo Università degli Studi di Milano UNIVERSITA' DEL MOLISE Université de Genève University College Dublin (UCD) University College London Hospitals NHS Foundation Trust (UCLH) University Hospital Center (CHU) Liège University Lucian Blaga of Sibiu University of California San Francisco/Catalyst Program University of Edinburgh University of Florida University of Glasgow University of Karachi University of Manchester University of Michigan Brehm Center University of Minnesota University of North Carolina Greensboro University of Notre Dame University of Oxford University of Puerto Rico University of São Paulo at Ribeirão Preto College of Nursing University of Sheffield University of South Florida University of Technology Sydney University of Valladolid University of Wolverhampton Uniwersytet Medyczny w Łodzi UNSED (Union Nationale des Syndromes d'Ehlers-Danlos) UPMC Children's Hospital of PIttsburgh Uppsala Monitoring Centre UTM Pre-Medical Club Vaasan Seudun Yhdistykset ry Vaincre les Maladies Lysosomales Vanessa Cerrone Events Vanessa Research Inc VASCAPA VectivBio VERENIGING SAMENWERKENDE OUDER EN PATIËNTENORGANISATIES (VSOP) Verlag Der Tagesspiegel GmbH vhl family alliance Greece VHL FRANCE Viapath Vico Therapeutics Vietnamese Organization for Rare Diseases Viljem Julijan Fund for rare diseases Vilnius University Hospital Santariskiu Klinikos VITFriends Vitiligo Support Group, Inc Voa Voa! Onlus - Amici di Sofia VON WILLEBRAND Santa Fe (Argentina) Vranch House School vzw Overdruksyndroom en Tarlov Cysten WA Angelman Syndrome Association WAGR Warriors Warsaw Genomics Watch 4 Wegeners WE ARE UNIQUE ETHAN FOUNDATION We Care Journey We meet the rare diseases Werathah Jordan Wiedemann-Steiner Syndrome Foundation Wiki Club Ohrid Wikimedia Movement Wilhelm Foundation Williams syndromföreningen i Sverige WindReach Bermuda Winnipeg regional Health Authority Wolfram Syndrome UK WonderFIL smiles Words Worth Repeating Words Worth Repeating World Alliance of Pituitary Organisations *WAPO* World Bladder Cancer Patient Coalition World Without GNE Myopathy (India) World Without GNE Myopathy (WWGM) Worldwide Syringomyelia & Chiari TF X&Y Fertility Xenon Pharmaceuticals XLH Australia Yale University School of Medicine Yayasan MPS dan Penyakit Langka Indonesia Yo Nemalinica Young Lungs Young Patients Committee (YPC) of TNA the Facial Pain Association Zambian Childhood Cancer Foundation (ZACCAF) Zavod 13 Zenopa Recruitment Zentrum für Seltene Erkrankungen (ZSE) Ulm Zentrum für seltene Erkrankungen Jena ГО ОРФАННІ-НПС (ORPHAN-NPC) Национална Алијанса за Невромускулни заболувања и Невронаука ГАНГЛИОН Скопје 蓝鲸罕见病专项基金(Blue Whale Rare Disease Special Fund)