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Organisation affiliated Association non-listed "SOURCE" Foundation #gyncsm Community 22q Family Foundation 51° Stormo - Istrana (TV) Aeronautica Militare 95, Rare Alliance Greece 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 AAME - Amigos da Atrofia Muscular Espinhal AANS UNAM Medical Student Chapter Aaron's Ohtahara Foundation ABC CRI DU CHAT Abeer Medical Group ABLD Academic League on Medical Genetics Acción y Cura para Tay-Sachs - ACTAYS ACHSE e. V. Allianz Chronischer Seltener Erkrankungen Acıbadem Üniversitesi Nadir Hastalıklar Günü Sempozyumu Action for A-T ACURARE-Acibadem University Rare Diseases and Orphan Drugs Application and Research Center ADAIF Addapters Addison's Disease Self Help Group Adenomyosis Advice Association Adisen - Asociación Nacional de Addison y Otras enfermedades Endocrinas Advocacy for Neuroacanthocytosis Patients AEPEF (la Asociación Española de Paraparesia Espástica Familiar) AFAG (Associação dos Familiares, Amigos e Portadores de Doenças Graves) AFASCOL AFG (Association Francophone des Glycogénoses) Aga Khan University Against All O.D.D.S. (Orphan Disease Defender Society) AHEDYSIA Aidel22 AILE ONLUS 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-Jawhara Centre/ Arabian Gulf University Alabama Rare ALAN - Maladies Rares Luxembourg Alanya Özel Eğitim Anaokulu ALER Asociación Leonesa de Enfermedades Raras y sin diagnóstico Alex TLC Alexandria University ALI KIMARA RARE DISEASE FOUNDATION 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. 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 Alternating Hemiplegia of Childhood (AHC UK) Ama Fuori dal Buio AMAVI Ambulatorio Di Genetica Medica del PO Vittorio Emanuele di Gela AMEI - Associazione Malattie Epatiche Infantili 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 AnDDI-Rares ANDO Portugal Angels4Patients Angioedema Belgium ASBL-VZW Angioma Alliance Aniridia Network ANNAPAREDDY CHARITABLE TRUST ANSEDH Answers for Erin Antwerp University Hospital and University of Antwerp AO Copiii Ploii AP-HP.Nord - Université de Paris APMPS/DR APRSW - associação paranaense de síndrome de Williams APSU APW Italia Onlus Arab Paediatric and Neonatal Medical Congress Arabic Organisation For Rare Diseases Arcoiris Onlus Arizona Carcinoid & Neuroendocrine Foundation, Inc. Armenian Hematology Association Army Against Leukodystrophy Arpan for Charity ARVC-Selbsthilfe e.V. As.Ma.Ra Onlus Asamsi Onlus ASBL ABeFAO Asbl Chiara VDS ASBL Chiara Vie, Don d'organes et Solidarité ASCER Asociación Chihuahuense de Enfermedades Raras Ashua Asia Pacific Alliance of Rare Disease Organisations ASOCIACION COAVALI - Asociación de Pacientes con Anomalias Vasculares y Linfedema Asociacion colombiana de Enfermedades Raras 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 Discapacitados Físicos de Móstoles (ADISFIM) Asociación de Enfermedades Raras de Castilla y León Asociación de Esclerodermia Castellón ASOCIACIÓN DE LUCHA CONTRA LA DISTONIA EN ARAGÓ (ALDA) Asociación Española de Aniridia ASOCIACIÓN ESPAÑOLA DE ESCLERODERMIA Asociación Española de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios Stop FMF Asociacion Espanola de Porfiria Asociación Mexicana de Enfermedades Lisosomales Asociacion Mexicana de Mucopolisacaridosis Asociación Miastenia de España (AMES) Asociación Nacional de Hipertensión Pulmonar Asociación Nacional Síndrome Treacher Collins Liam Mx Asociacion Niemann Pick Asociacion para Todos - Unidos por la salud Asociación Paraguaya de Pacientes con Enfermedades Lisosomales APPEL Asociación Peruana de Lupus Asociación Todos Unidos Enfermedades Raras Uruguay Asociatia Andreas-Rares Asociaţia Cetatea Voluntarilor Asociația Gaucher România Asociatia pentru Huntington din Romania Asosiacion Civil Humberto Da Silva ASPDR - Associação Sergipana de Pessoas com Doenças Raras ASPEC - Associção de Paraparesias Espasticas Correlatas do Brasil ASPHER Aragón Aspida Zois (Association for Inherited Metabolic Diseases) 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 Kokua, cães de ajuda social Associação Portuguesa de Doentes Neuromusculares Associação Portuguesa de Neurofibromatose, APNF Associação Regional de Esclerose Lateral Amiotrofica de Minas Gerais Associació de malalties minoritaries d’Andorra (AMMA) Association ADEM des Maladies Rares Association AHC18+ und Kooperationspartner Association Algerienne du Syndrome de Williams et Beuren 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 Hereditary Cancer/ Paveldimo vezio asociacija 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 Humanitaire contre les Maladies Association IRIS Association marocaine des maladies auto-immunes et systémiques (AMMAIS) Association Marocaine Enfance et Maladies Orphelines Association Neurofibroma-Togo Association Nigérienne de l’hémophilie Association of Citizens for Rare Diseases "Life With Challenges" Association of citizens for rare diseases LIFE WITH CHALLENGES Bitola Association of Genetic Support of Australasia Association of Patients with Blood Diseases Slovenia - DRUŠTVO BOLNIKOV S KRVNIMI BOLEZNIMI SLOVENIJA Association of Rare Disease Patients Bosnia Herzegovina Association of Rural Family Doctors of Latvia Association pour la Sensibilisation aux Maladies Rares, Orphelines et Auto-immunes à Saint-Pierre et Miquelon Association Rebeca Faith Hope Love Association Rett Syndrome Greece Association Shifa des Maladies NeuroMusculaires Association XY Association Zoé Action 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 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 di Williams Associazione Italiana Sindrome X-Fragile Associazione Linfa Odv Associazione Nazionale Atassia Telangiectasia Onlus Associazione Nazionale Sindrome di Noonan e RASopatie ODV Associazione Perthes Italia aps Associazione Ponte Linari Associazione Sclerosi Tuberosa Associazione Sindrome Bardet Biedl Italia 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 Care Project Ataxia Support Group Cornwall Ataxia Telangiectasia National Association Aussie Tubie Mates Australian NPC Disease Foundation Inc Australian Sickle cell Advocacy Inc Autoimmune Resource & Research Centre Autour des Williams Avepel Avery's Hope Awareness raising for Neuromyelitis Optica (NMO) Ayoudas Panama Azienda Ospedaliera di Perugia Azzurra Associazione Malattie Rare Onlus Ball State University Barrie Community Health Centre (BCHC) Başkent Üniversitesi Batten Disease Australia Batten Disease Support and Research Association Baylor College of Medicine BCM Families Foundation Beat SCAD Bedaya Befemder Belgische Organisalie Voor Kinderen En Volwassenen Met Een Stofwisselingsziekte Beyciler Mukaddes Sönmez Secondary School Bezmi̇alem Vaki̇f Üni̇versi̇tesi̇ Bijniervereniging NVACP Bin Adam Foundation Bind up Batten Fund in Beyond Batten Disease Foundation Bindweefsel.be - Vlaamse Vereniging voor Erfelijke Bindweefselaandoeningen vzw Biomedical Research Centre Guys and St Thomas NHS Foundation Birmingham Children's Hospital Biruni University 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 Buckhorn Community Centre Bulgarian Huntington Association Bulgarian Organisation of Voluntary Blood Donation CADASIL Together We Have Hope Non-Profit Organization Cairo University Cajuns for a Cure Cal State East Bay Concord Cambridge BioMarketing Cambridge Rare Disease Network Canadian CdLS Foundation Canadian Fabry Association Canadian Organization for Rare Disorders CannaCrawlersAtlanta Cardiff School of Optometry and Vision Sciences Carion Fenn Foundation Casa Famiglia Rosetta Casa Hunter Cátedra de Anatomía Patológica A-FO-UNC CBLC ONLUS CDH UK CDKL5 Alliance Francophone CdLS האגודה הישראלית 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 and Undiagnosed Diseases (CeRUD) Center for Rare Diseases in Stockholm Center for Rare Diseases Research of the School of Medicine, New Vision University Center for Reproductive Medicine, Renji Hospital, School of Medicine, Shanghai Jiao Tong University, Shanghai, China 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 Investigación en Anomalías Congénitas y Enfermedades Raras. CIACER 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 Cetatea Voluntarilor Arad Change Team Africa Charitable Foundation "LA BEAUTY" Charitable Foundation"Sister Dalila", PHURDA Charity Foundation Nuzhna Pomoshch (Help Needed) Charlotte and Gwenyth Gray Foundation Child & Youth Care, Zimbabwe Children in Distress Children's Hospital of Shanghai Childrens Joy Association China Alliance for Rare Disease (CHARD) China Dolls Care and Support Association 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 CIPF Centro de Investigación Príncipe Felipe City of Warren CIUSSS du Saguenay-Lac-Saint-Jean / CORAMH Clinical Research Unit at the Montreal Neurological Institute and Hospital Clinical Science Associate Panama CMID - Centro di Coordinamento Rete Interregionale per le Malattie Rare del Piemonte e della Valle d'Aosta CMTC-OVM US CMTCanada (Charcot-Marie-Tooth) Collectif Journée des Maladies Rares Montpellier 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 Comune di Polignano a Mare COMUNE DI ZOLA PREDOSA Comunidad Prader-Willi en Uruguay Comunidad Síndrome Apert Bolivia Conectiva.Lat Congresso Nacional Brasileiro Conselho Municipal de Saúde da Cidade de São Paulo Consiglio Regionale della Toscana 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 Corpo Bandistico Musicale Telgate 90 Corporación ANACROJ CPT LECCE FONDAZIONE TELETHON Crain Family Foundation CRESSC - Interregionale Center of Expertise for Chiari Syndrome and Syringomyelia Crossing Connection Health CSF (Chiari & Syringomyelia Foundation) CSF Leak Association CSNK2A1 Foundation CTI Clinical Trial and Consulting Services (USA) Cummins Area School Cure Sanfilippo Foundation Cyprus Alliance for Rare Disorders (CARD) Cystic Fibrosis Slovenia Cystinosis Research Network d.Jamal ahmad rashid Pediatrics Teaching Hospital Sulaimanyah Iraq D'Genes Dachverband Selbsthilfe Salzburg Danielle's Hope DDX3X Foundation DEBRA Bosna i Hercegovina DEBRA CZ Debra Italia Onlus Debra Mexico debra of America (The Dystrophic Epidermolysis Bullosa Research Association of America) DEBRA Slovenia DEBRA UK Delaware HOSA 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 Derecho a la Vida Deutsche Gesellschaft für autoinflammatorische Erkrankungen Dipartimento di Medicina- DIMED Università degli Studi di Padova Direccion de programas sanitarios Disability and Social Interaction Lab at Oregon State University Distrito de Salud 04D02 DOCAS (District Outreach for Care and Support) Dr. Alnadi Clinic for Gastroenterology and Liver diseases Dravet Italia Onlus Drexel College of Medicine Duke Consortium for Inflammatory Breast Cancer (IBC) Dúshlán Dystonia Europe & ARD - Associazione Italiana per la Ricerca sulla Distonia E.D.S AWARENESS IRELAND Early intervention Association EB Haus Austria Eclas - Ensemble contre l'amyotrophie spinale de type 1 EDS GUATEMALA Egyptian Group for Orphan Renal Diseases (EGORD) Egyptian society of medical genetics Ehlers-Danlos Syndrome Canada Ehlers-Danlos Syndrome Vermont EINSTÖK BÖRN - Support Group for Children with Rare Disorders El Hospital Vall d'Hebron de Barcelona Emory Genetics Laboratory EmRaDi EMUVCO Enfermedades Raras Costa Rica ERN ReCONNET Estonian Agrenska Foundation European Reference Network for Rare Neurological Diseases (ERN-RND) EURORDIS-Rare Diseases Europe Fabry Australia Facultad de Medicina de la universidad central Facultad de Medicina UAQ Facultad de Medicina, UABC 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) Family support group for rare diseases of Oman Farmacia Colussi SNC - Martignacco (UD) FAROMDER Solidaritätsverein der Seltenen autoinflammatorischen autoimmune- und rheumatischen Erkrankungen FAROMDER Nadir Ottoimün ve Romatizmal Hastaliklar Dayanisma Dernegi FD Warriors and The FD Foundation FECAMM FECHER Federação das Doenças Raras de Portugal 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 Poco Comunes Federación Peruana De Enfermedades Raras (FEPER) FEDRANN - FEDERAÇÃO DAS ASSOCIAÇÕES DE DOENÇAS RARAS DO NORTE NORDESTE E CENTRO OESTE FEVEPOF FEDERACION VENEZUELA Fibromuscular Dysplasia Society of America Fight For Rare Disease, Inc Filière Sensgene Filières de santé Fimatho et G2M Filières de Santé Maladies Rares FIMATHO - Filière de Santé des Malformations Abdomino-Thoraciques Findacure 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 FOP Australia FOP Friends FOP ITALIA ONLUS Förderverein für Kinder mit seltenen Krankheiten Forum Campano delle Associazioni di Malattia Rara Forum Seltene Krankheiten Forum Toscano Associazioni Malattie Rare aps 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 AME Costa Rica Fundacion Doblesonrisa Fundacion Ecuatoriana de Pacientes con Enfermedades de Deposito Lisosomal Fundacion FUPER FUNDACION GEISER FUNDACION GEISER - GRUPO DE ENLACE, INVESTIGACION Y SOPORTE ENFERMEDADES RARAS Fundación GIST Fundación GIST Colombia Fundación IMO Fundacion Lautaro Fundación Lovexair Fundacion Lovexair Fundación María Laura Fundación Mexicana de Prevención y Salud Materna Fundación Nacional Miastenia Gravis Ecuador Fundacion Niños de Cristal (OI) Fundación para la Prevención de la Discapacidad, Fundis Fundación Pasitos de Alegría and A STAR for Martina Fundación Red Sanfilippo Fundación Retina España Fundación Síndrome de Cantú Argentina Fundacion Teleton Fundacion Vida Suenos y Esperanza Fundacja Sanfilippo FUNEDERE - Fundación para el Estudio y Divulgación de las Enfermedades Raras en el Ecuador FUPIER-Fundación GADS Global Aortic Disease Support Garrett the Grand - Batten Fighter GBS/CIDP Foundation of Canada GCAA GEDR Brasil GENerando Esperanza Genetic Alliance UK Genetic and Developmental Medicine Clinic Genetic and Rare Disease Network Genetic Support Network of Victoria Genética Médica Genetics Department - Hackensack University Medical Center Genetics Otago GENEXT Diagnóstico Molecular Genodermatoses Network Geoergian Society of Medical Geneics and Epigenetics Georgian Foundation for Genetic and Rare Diseases Georgian Society for Inborn Errors of Metabolism (GSIEM) German Archaeological Institute GI MNM Non Déterminées AFMTéléthon Girl Scouts of Northern California GIST Chile Glasgow University Rare Disease Association Gli Equilibristi HIBM Godvild Great Ormond Street Hospital for Children GREEK ALLIANCE FOR RARE DISEASES Groupe d'Entraide des Syndromes d'Ehlers-Danlos Gründung Zentrum für Interstitielle und Seltene Lungenerkrankungen (ZISLE) Grupo Argentino de Ayuda al Paciente con Enfermedades Raras (GADAPER) Grupo de Estudos de Doenças Raras Brasil Grupo de Pessoas, familiares e amigos com Doenças Raras do município de Uberlândia e região Grupo Paraná de Síndromes e Doenças Raras Gruppo Consultazione Malattie Rare Liguria GUaRDIAn Consortium Guardian Hands Foundation H-MGA Hacettepe University HAE Junior Haemophilia Foundation Of Nigeria Hamad Medical Corporation Harmony 4 Hope Harrington Discovery Institute HARSO - Rare Disease Alliance Finland HARVINAISET VERKOSTO - The Finnish Network for Rare Diseases Haude Elementary School HCU Network Australia Helen DeVos Children's Hospital Hellenic Endocrine Society HELLENIC MYASTHENIA GRAVIS ACOSSIATION Hemophilia Society Ahmedabad Chapter Hepar Centar Bitola Heroic Inner Kids HHT ONLUS High Hopes Pediatric Therapy Center Dubai Hipertensión Pulmonar España Organización de Pacientes HIPOFAM HKARD Hong Kong Alliance for Rare Diseases Hodgkin en non-Hodgkin vzw Hong Kong Alliance of Patients' Organizations Hope Alive Ministry Hope Floats Foundation Hôpital Européen Marseille Hôpital Necker- Enfants malades Hôpital Universitaire Robert-Debré - AP-HP Hospital of Lithuanian University of Health Sciences Kauno klinikos Hospital de Especialidades Carlos Andrade Marin Hospital de Especialidades Pediátrcias Hospital de Niños de Córdoba Hospital of Lithuanian University of Health Sciences Kauno klinikos Hospital Pequeno Príncipe Hospital Sant Joan de Déu Barcelona Hospital Santa Marcelina Hospital Universitario San Jose de Popayan ESE Hunter Medical Research Institute Hunter Syndrome Foundation HWTH Health Awareness Campaign i3S - Instituto de Investigação e Inovação em Saúde II. osnovna škola Čakovec IIH UK Il Cortile di Edy Il Divo Korean Divas Illness Challenge Foundation IMAGINE ID Immunology, Asthma and Allergy Research Institute, Tehran University of Medical Sciences INDEPF Indian Organisation for Rare Diseases Indian Society for Clinical Research Individual from Slovenia Indonesia CARE for RARE Diseases Indonesia Rare Disorders InfoMaladiesRares Iniciativa pensemos en Cebras México INSMC Alessandrescu-Rusescu Institute for Rare Diseases Institute of Biochemistry and Biophysics Polish Academy of Sciences Institute of Genetic Medicine- Newcastle University Institute of Mother and Child Instituto Alta Complexidade Política & Saúde e o Observatório de Doenças Raras da Universidade de Brasília Instituto Baresi INSTITUTO DE GENETICA (UMSA) INSTITUTO DE INVESTIGACION BIOMÉDICA DE MALAGA (IBIMA) Instituto de Investigación Sanitaria INCLIVA Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado Instituto Mexicano del Seguro Social Instituto Nacional de Saude Ricardo Jorge Instituto Vidas Raras Inter-regional support center for patients with aniridia "Iris" Intergruppo Parlamentare per le Malattie Rare Internacional Federation of Medical Students Association Brazil UFRN International Federation of Medical Students (IFMSA-Jo) International Foundation for Guillain-Barre Syndrome International School Geneva International XLH Alliance Invincible Vision IOMC Alfred Rusescu IPASSI IRCCS - Istituto di Ricerche Farmacologiche Mario Negri. IRCCS NEUROMED Islah's Sparkle Appeal ISMRD ISTITUTO COMPRENSIVO "L. PILLA" - VENAFRO Istituto di Ricerche Farmacologiche Mario Negri IRCCS Istituto Superiore di Sanità ivzw Eye Hope Jennifer's GP House Jerónimo Medina jmstest John Curtin School of Medical Research Jordan's Guardian Angels Jornada Enfermedades Raras y Defectos Congenitos - Ecuador 2017 Joshua Hellmann Foundation for Orphan Disease Jovens pela Saúde - Euma Fortes Lopes JPA JSS Medical College Kallmann syndrome patient support group Keeping Chronic Pretty Kennedy's Disease Association KGI Students for Rare - NORD Chapter Khim Lamichhane Kazi Kids Connect Kids In Motion Pediatric Therapy and Wellness Kindness for Kids King Saud Medical City Kingston University Kleine-Levin Syndrome Foundation Klippel-Feil Syndrome Freedom Kokoro Kids Kongenitaler Hyperinsulinismus e.V. Korean Organisation for Rare Diseases KRIKOS ZOIS GREEK ASSOCIATION FOR INHERITED METABOLIC DISEASE Kurdistan rare disease center KuvaWorld for Children l'Association Kemil et ses amis l'espérance Fibromyalgia Organisation (LEFIFO) L2AME (lutte contre la Leucémie Aigue et l'Aplasie Médullaire chez l'Enfant) La Famille Kiroul La Federazione Malattie Rare Infantili (Torino) La Gemma Rara LA PURISIMA FRANCISCANAS VALENCIA Laboratório de Biomedicina Mitocondrial e Teranóstica - CNC e FMUC, Universidade de Coimbra. Latvian Alliance for Rare Diseases Le Ali di Camilla Le Cardamomò Lebanse Association for Neuromuscular Diseases Les Athlés Solidaires Les filières de santé maladies rares de Trousseau Libyan Medical Students and Young Doctors Association - Misurata Liga do Cariri de Genética Liga Interdisciplinar de Genética Médica da Universidade Federal de São Carlos(UFSCar)/Interdisciplinary Group of Medical Genetics Of The Federal University of São Carlos (UFSCar) Lindsey Garcia/Dempster Family Foundation Lipodystrophy United Lithgow Medical Clinic Little Miss Hannah Foundation Little people of Hong Kong Little Zebra Fund Llywodraeth Cymru | Welsh Government LND Famiglie Italiane Onlus Looms for Lupus Love for Kids Inc Luckwell Primary School Luka The Lion Foundation Lupus Alert Organisation LYSOSOMAL STORAGE DISORDERS SUPPORT SOCIETY- INDIA Ma'an Center for Special Education Macedonian Medical Students' Association (MMSA Macedonia) Maistrachi per Davide Malaysia Lysosomal Diseases Association MALAYSIAN RARE DISORDERS SOCIETY MALTA ALLIANCE FOR RARE DISEASES (MARD) MaRaVal – maladies rares valais – seltene krankheiten wallis Maria Ruggeri Onlus Marigold Foundation Mashael Al-SHam School Mass Communication Department - American University of Sharjah Mastcellssjukdomar Sverige Masters Level Social Work Organisation (MSWO) MATIO-FUNDACJI POMOCY RODZINOM I CHORYM NA MUKOWISCYDOZĘ McGill Medical Students' Society Rare Disease Interest Group (rareDIG) McGill University's Rare Disease Interest Group MCST (Almaarefa college for science & technology ) medicine MDA Hellas MDS Foundation MED13L Foundation Medical Genetic Service of the Perugia Hospital Medicine and Odonto Stomatology of Bamako Meir Medical Center Melbourne Health Memorial Health Group Metabolic team - Pediatric department - Ministry of health MiaThrives Millys Mission Ministerio de Salud Ministerio de Salud de la Nación - Argentina Ministerio de Salud de Nicaragua (MINSA) Ministry of Health Ministry of Health of the Republic of Slovenia MIO-LIFE Mission College Prep Mission San Jose High School Students for Rare Diseases Club Mitocon ONLUS MKSE mitteldeutsches kompetenznetz für seltene erkrankungen Molly's Voice Mondo Charge Morbus Osler Selbsthilfe e.V. Move2Advocate MSD Action Foundation Mundo Marfan Latino Municipalidad de La Matanza Muscular Dystrophy Association of NZ My Normal | storytelling for rare disease health My PKU Awareness Myasthenia Gravis Association of Queensland Myositis Support and Understanding Association, Inc. Myotonic Myotonic Dystrophy Support Group Myotubular Trust Nacionalna organizacija za rijetke bolesti Crne Gore Nadir Hastalıklar Ağı (Rare Diseases Network of Turkey) Naevus 2000 NAEVUS ITALIA Namibian Alliance for Rare Diseases National Academy of Young Scientists (NAYS) National Alliance for Rare Diseases of R. Macedonia NATIONAL ALLIANCE OF PEOPLE WITH RARE DISEASES (NAPRD) National Alliance of Rare Diseases of Slovenia National Association for Diagnosis and Education of Rare diseases (NADER)- RarEgypt National Association for Rare Diseases (NARD) National Association of Patients with Rare Diseases '"GENETICA" NATIONAL ASSOCIATION OF ARNOLD CHIARI (ANAC) National Brain Appeal National Center for Advancing Translational Sciences, National Institutes of Health National Center for Diabetes Endocrinology and Genetics National Guard Hospital and Saudi Society of Medical Genetics. National Hospital of Pediatrics in Hanoi National Institute of Technology Calicut National Institutes of Health National Organization for Rare Diseases of Serbia NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) National Organization of Cystic Fibrosis in Moldova National Patients' Organisation of Bulgaria (NPO) NBIA Canada Nemours Alfred I. duPont Hospital for Children Neurofibromatose Regionalgruppe Sachsen-Anhalt und Städtisches Klinikum Dessau NEUROHEREDITARY DISEASES CHARITY ASSOCIATION New York City Health & hospitals/Metropolitan Newcastle University NGO "Rare Diseases of Ukraine" NGO Committee for Rare Diseases NHS Grampian NIHR Biomedical Research Centre at Moorfields Eye Hospital NIHR Rare Diseases Translational Research Collaboration NMC Midlands NOC Nätverket för ovanliga kromosomavvikelser NOI Huntington Northern Ireland Rare Disease Partnership NORWEGIAN DIRECTORATE OF HEALTH Norwegian Federation of Organizations of Disabled People (FFO) Norwegian National Advisory Unit on Rare Disorders NYC Health + Hospitals/Metropolitan Observatório de Doenças Raras (ODR) da Universidade de Brasília OcuMel UK Office for Rare Conditions Oman Society for Genetic Medicine ONCOLOGY EDUCATION AND RESEARCH HOSPITAL Organización Mexicana de Enfermedades Raras Organizatia "Trebuie" Braila, Andreas-Rares.eu & Colegiul National "Ana Aslan" Braila ORGANIZATION FOR RARE DISEASES INDIA Orphanet Germany Ospedale Luigi Sacco Ospedale Pediatrico Bambino Gesù Osservatorio Malattie Rare OSTUNI RUNNER’S Oxford-Harrington Rare Disease Centre Pacientes Autoconvocados Palmerston North City Library Pancyprian Association for Rare Genetic Diseases "Unique SMILES” PANDAS Italia Para mayor información contacte a la Fundacion CroniCare, miembro del Comité Organizador de la Semana de las Enfermedades Huérfanas en la ciudad de Cali Parent Project aps Parental project to help patients with Duchenne / Becker muscular dystrophy Parkinson Cameroun Patient Empowerment Network Pediaclinic PEMERAC (Programa de Educación Médica en Enfermedades Raras y Anomalías Congénitas) PEMEX Central South Hospital Perthes Kids Foundation Pesquisa Neonatal Corrientes Argentina PHA Foundation PHA Latvia phaware global association Phelan-McDermid Syndrome Foundation Australia Philippine Society for Orphan Disorders, Inc. (PSOD) PHURDA Piedmont and Aosta Valley Rare Diseases Network Pingrup Community Resource Centre PIP-UK Pituitary Community South Africa Plataforma Malalties Minoritàries Plateforme de coordination des maladies rares de la Guadeloupe - KARUKERARES POLICONDRITE AMIGOS - REDE BRASILEIRA PELA POLICONDRITE RECIDIVANTE Polish Association for People Affected by AHC Polish Association for People Affected by AHC Polish CF Foundation MATIO Polish MRKH Support Polish National Forum on the Treatment of Orphan Diseases - ORPHAN POMC ISLAND Pompe Deutschland e.V. Pontificia Universidad Javeriana Colombia Pontificia Universidad Javeriana Colombia Prader Willi Vlaanderen PRISMS Pro Rare Austria, Allianz für seltenen Erkrankungen Procrece Prof. dr. Stanislaw Popowski Regional Specialized Children’s Hospital in Olsztyn Progetto Grazia Programa de Pesquisa Neonatal Progressive Supranuclear Palsy - PSP Warwickshire (Facebook Support Group) Projeto LIA - Lazer, Inclusão e Acessibilidade ProRaris Providence Middle School PubhD Leicester Pulmonale Hypertonie Selbsthilfe Pulmonary Hypertension and Scleroderma Patient Association Pulmonary Hypertension Association PURA Syndrome Foundation PVNH Support & Awareness Quaid-i-Azam University Queen Elizabeth Hospital Birmingham Charity Quinnipiac University RAAR v.z.w. RADIORG - Rare Diseases Organisation Belgium Raise Brave Girls Rare and Orphan Diseases Patient Associations Platform in Turkey Rare and Undiagnosed Network of Charlotte Rare Disease Association "Caladrius" Rare Disease Brisbane Rare Disease Film Festival Rare Disease Foundation Rare Disease Foundation of Iran Rare Disease Genomics RSA Rare Disease Ghana Initiative Rare Disease Info Swap Rare Disease Legislative Advocates Rare Disease Legislative Advocates Rare Disease Network Rare Disease Network of Alberta Rare Disease Salzburg Rare Disease UK Rare Diseases Association Albania Rare Diseases Croatia Rare Diseases Czech Republic (Ceska ascociace pro vzacna onemocneni) Rare Diseases Denmark (SJAELDNE DIAGNOSER) Rare Diseases Hungary - Hungarian Federation of People with Rare and Congenital Diseases Rare Diseases India - Foundation for Research on Rare Diseases and Disorders Rare Diseases International RARE DISEASES IRELAND Rare Diseases Kosovo (Shoqata e emundjeve te rralla Kosove) RARE Diseases Lesotho Associations Rare Diseases Lithuania Rare diseases Sweden (RIKSFÖRBUNDET SÄLLSYNTA DIAGNOSER) Rare Diseases TRC & Cambridge Rare Disease Network Rare Disorders Kenya Rare Disorders New Zealand Rare Disorders Society (Singapore) Rare Disorders Trust Rare Friends Rare Friends FNQ Rare Genomics Rare Genomics Institute Israel RARE Ireland Rare New England Rare Voices Australia Ltd. RARE. RAREsies Rule Raríssimas RD Portugal RDD Japan RDD Japan Real Experience Books Rebecca Morrish Red de Enfermedades Raras de Yucatán REFERENTE AISMAC CATANIA Reflex Sympathetic Dystrophy Syndrome Association Regional Directorate for Health Regione Lombardia Regione Siciliana Dipartimento Attività Sanitarie e Osservatorio Epidemiologico Regroupement québécois des maladies orphelines Relapsing Polychondritis Awareness and Support Foundation Inc. Research Institute of the McGill University Health Centre RespiriAMO Rete Malattie Rare onlus RETE REGIONALE A.MA.RE PUGLIA Retina Uganda Rett Syndrome Association Russia RETT UK RhizoKids in Arabs Robious Middle School ROMANIAN NATIONAL ALLIANCE FOR RARE DISEASES Romanian Prader Willi Association Royal Brompton & Harefield NHS Foundation Trust RPU "Association of supporting patients suffering from oncological and rare diseases" Running On Air Russian Association of Rare Diseases Russian Interregional charitable organization of disabled persons “Union of patients' and patients' organization with rare diseases” Russian Patients Association Rutgers University Rutgers University Biomedical and Health Sciences and Rutgers Student DIA Chapters Rylan Chen Ryland Grace Memorial Sahabat Pierre Robin Sequence (PRS) Same but Different Samskara Samy Arman & Tuning Life Society San Marcos Elementary- Mrs. Lyon & Mr. Chapman SANEM/SNS Sanfilippo Children’s Foundation Sanford-Burnham Medical Research Institute Sanski Most General Hospital Sant Joan de Déu, children's hospital in Barcelona Sarah and Friends Foundation Sarcoidosis of Long Island Sarp's Hope Foundation Saudi Society of medical genetics SAVE LIVER - SLAP Sciences City Scleroderma Foundation SCN2A Awareness Scoala gimnaziala " Gheorghe Lazar" See Rare Run Seguimos viviendo Selbsthilfegruppe SPRUE / ZÖLIAKIE im Großraum Mainz-Bingen Servei de salut comunitària de l'Ajuntament de Terrassa Service de génétique clinique Servicios Integrales para la Atención y Prevención de la Discapacidad (SINDIS) Share4Rare Sheba - Academic Medical Center Hospital Sheffield Autism Research Lab (ShARL) Rare Disease Day activity Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences Sheikh Hamdan Bin Rashid AL Maktoum Award for Medical Sciences SickKids Sindrome de Rett Guatemala SIOPE: The European Society for Paediatric Oncology Slovak Alliance of Rare Diseases Slovenian Gaucher Association/Dru¹tvo bolnikov z gaucherjevo boleznijo Slovenije SM SPEROMAX Alba Asocciation SMA Benimle Yürü Derneği Smart Vision School Dubai SmashSMARD Smith Ford Social Fund "Omirge sen" (Believe in Life) in Kazakhstan SOCIEMUVEM Soft Bones, Inc Hypophosphatasia foundation SOGAPAR Solidarité Handicap "Autour des maladies rares" Spierziekten Vlaanderen vzw Spinal CSF Leak Foundation Sri Lanka College of Paediatricians St. Joseph's Children's Hospital Städtisches Klinikum Dessau Starfish Orphaned Charity Steve Waugh Foundation Stichting OverdrukSyndroom NL Stichting Spierkracht Stichting voor Afweerstoornissen Stiff Person Syndrome Support Group Stiftung Lichterzellen Studenckie Koło Naukowe Genetyki Medycznej Student Parliament of the Faculty of Pharmacy (MPSA) Sultan Bin Abdulaziz Humanitarian City Svenska Ödemförbundet TAIWAN FOUNDATION FOR RARE DISORDERS Takatof Group and "ThiQbi" Initiative TAMS The Australian Mastocytosis Society Tarlov Cyst Society of Australia Tartu University Hospital Children's Foundation Téa Lake and the Rare Disease Association Telethon Tricase-Liceo COMI TerraBiz test association Tevfik İleri Secondary School Thai Rare Disease Foundation Thalassemia Foundation Ghana The Alle Shea Project The Angel Project The Association of Citizens with Pulmonary Hypertension "Breath" in Bosnia and Herzegovina The Blackpool Fylde & Wyre Haemochromatosis Support Group The Champ foundation The European Charcot-Marie-Tooth Federation The Firefly Fund The FPIES Foundation The John Curtin School of Medical Research The LAM Foundation The Masters School The MHE Research Foundation The Nathan Asher Foundation The National Alliance for Rare Diseases Support Malta The NYSCF Research Institute The Ocular Motor Apraxia Community The Patient Experience Project The Pituitary Foundation The Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR) The Progeria Research Foundation The Rare Disease Society of South Africa The Rare Disease Society of South Africa The Rose F. Kennedy IDDRC The Swedish National Agency for Rare Diseases (NFSD - Nationella Funktionen Sällsynta Diagnoser) The Whitworth Group The World of Rare Diseases Tom Wahlig Stiftung Jena Transform My Beauty Trazando lo Invisible TreatmentDiaries.com TRIPOLI CHILDREN HOSPITAL Tuberous Sclerosis Complex New Zealand 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 UK Renal Registry Un Filo per la Vita Onlus Un Milagro Para Dos Angelitos UN SOFFIO DI SPERANZA. IL SOGNO DI EMANUELA ONLUS UNC Catalyst for Rare Disease UNIAMO - FEDERAZIONE ITALIANA MALATTIE RARE Unidad de investigación social en salud y enfermedades raras. Universidad de Valladolid Unidad Docente de Medicina Familiar y Comunitaria 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 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 South Florida University of Valladolid University of Wolverhampton University of York and York Teaching Hospital Uniwersytet Medyczny w Łodzi UNSED (Union Nationale des Syndromes d'Ehlers-Danlos) UPMC Children's Hospital of PIttsburgh UTM Pre-Medical Club Vaasan Seudun Yhdistykset ry Vaincre les Maladies Lysosomales VASCAPA VERENIGING SAMENWERKENDE OUDER EN PATIËNTENORGANISATIES (VSOP) VHL FRANCE Viapath Viljem Julijan Fund for rare diseases Vilnius University Hospital Santariskiu Klinikos Voa Voa! Onlus - Amici di Sofia Vranch House School WA Angelman Syndrome Association WA Branch of the Human Genetics Society of Australasia WAGR Warriors WAGR Warriors WE ARE UNIQUE ETHAN FOUNDATION We Care Journey werathah Werathah Jordan World Without GNE Myopathy (India) Worldwide Syringomyelia & Chiari TF 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 Zentrum für Seltene Erkrankungen (ZSE) Ulm Всероссийское общество орфанных заболеваний Теплица социальных технологий ФОРУМ ПАЦИЕНТОВ С РЕДКИМИ ЗАБОЛЕВАНИЯМИ (SPIPORZ)
