Title of the event*
Name of your organisation*
Starting date*
Ending date
Organisation affiliated Association non-listed #gyncsm Community 22q Family Foundation A.Ma.R.A.M. Associazione Malattie Rare dell'Alta Murgia ONLUS A.R.I.S. (Associazione Retinopatici ed Ipovedenti Siciliani) AAME - Amigos da Atrofia Muscular Espinhal Aaron's Ohtahara Foundation ABC CRI DU CHAT Abeer Medical Group 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 Medicines Research Center Adenomyosis Advice Association Advocacy for Neuroacanthocytosis Patients AEPEF (la Asociación Española de Paraparesia Espástica Familiar) AFAG (Associação dos Familiares, Amigos e Portadores de Doenças Graves) AFG (Association Francophone des Glycogénoses) Aga Khan University Against All O.D.D.S. (Orphan Disease Defender Society) AHEDYSIA AIRM - Italian Association for Mitochondrial Research AISA LIGURIA ONLUS Associazione italiana per la lotta alle Sindromi Atassiche AKABE (ASSOCIATION KABUKI BELGIUM) Al-Jawhara Centre/ Arabian Gulf University ALAN - Maladies Rares Luxembourg ALD Life ALI KIMARA RARE DISEASE FOUNDATION Aliança Brasileira de Genética - ABG Aliança Portuguesa de Associações das Doenças Raras Alianza Mexicana de Familias con Von Hippel Lindau, A.C. Alliance Algérienne contre les Maladies Rares Alliance for Cryoglobulinemia Alliance Maladies Rares ALMOHA: Association de Lutte contre les Maladies rares, les maladies Orphelines et le Handicap en Afrique Ama Fuori dal Buio AMAVI Ambulatorio Di Genetica Medica del PO Vittorio Emanuele di Gela AMFMF (Association Marocaine de la fièvre méditerranéenne familiale et des autres fièvres récurrentes héréditaires) Amigos del Tourette Chile Amigos Metabolicos Amour Fund Amri ONLUS AnDDI-Rares Angels4Patients Angioedema Belgium ASBL-VZW ANNAPAREDDY CHARITABLE TRUST Answers for Erin APMPS/DR APSU Arab Paediatric and Neonatal Medical Congress Arcoiris Onlus Arizona Carcinoid & Neuroendocrine Foundation, Inc. Armenian Hematology Association Army Against Leukodystrophy Arpan for Charity ASBL ABeFAO Asbl Chiara VDS ASBL Chiara Vie, Don d'organes et Solidarité Ashua 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 Esclerodermia Castellón ASOCIACIÓN DE LUCHA CONTRA LA DISTONIA EN ARAGÓ (ALDA) Asociacion Espanola de Porfiria Asociación Mexicana de Enfermedades Lisosomales Asociacion Mexicana de Mucopolisacaridosis Asociación Miastenia de España (AMES) Asociación Nacional de Hipertensión Pulmonar 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 Asociaţia Cetatea Voluntarilor Asociatia pentru Huntington din Romania Asosiacion Civil Humberto Da Silva ASPDR - Associação Sergipana de Pessoas com Doenças Raras Aspida Zois (Association for Inherited Metabolic Diseases) ASrid ASRID Rare Disease Day Office 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 Association ADEM des Maladies Rares Association AHC18+ Association Algerienne du Syndrome de Williams et Beuren Association Anna Association Belge du Syndrome de Marfan Association Espoir Vaincre les Maladies Lysosomales au Maroc Association for Hereditary Cancer/ Paveldimo vezio asociacija Association for patients Rett syndrome Association for the Wellbeing of Children in Healthcare (AWCH) ASSOCIATION FRANCAISE DE L'ATRÉSIE DE L'ŒSOPHAGE Association Humanitaire contre les Maladies Association marocaine des maladies auto-immunes et systémiques (AMMAIS) Association Marocaine Enfance et Maladies Orphelines Association Neurofibroma-Togo 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 Rural Family Doctors of Latvia Association pour la Sensibilisation aux Maladies Rares, Orphelines et Auto-immunes à Saint-Pierre et Miquelon Association Rett Syndrome Greece Association Shifa des Maladies NeuroMusculaires Association XY Associazione Amici della Laguna e del Porto Associazione del Lazio Sindrome X Fragile Associazione FEIMAR BAT ONLUS( Federazione Italiana Malati Rari della Bat) Associazione italiana Adrenoleucodistrofia Associazione Italiana Malattie Neurologiche Rare (AIMNR) Associazione Italiana per l'Eteroplasia Ossea Progressiva Onlus Associazione Italiana Sindrome di Williams Associazione Italiana Sindrome X-Fragile 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 ASST Lariana Como Aston University Neuropsychology Laboratory Ataxia Support Group Cornwall Ataxia Telangiectasia National Association Aussie Tubie Mates Autoimmune Resource & Research Centre Autour des Williams Aux Pas du Coeur Avepel Awareness raising for Neuromyelitis Optica (NMO) Azienda Ospedaliera di Perugia Azzurra Associazione Malattie Rare Onlus Barrie Community Health Centre (BCHC) 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 Bezmi̇alem Vaki̇f Üni̇versi̇tesi̇ 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 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 Cajuns for a Cure Cal State East Bay Concord Cambridge BioMarketing Cambridge Rare Disease Network Canadian Fabry Association Canadian Organization for Rare Disorders Carion Fenn Foundation Casa Hunter CBLC ONLUS Centenario Hospital Miguel Hidalgo Center for Human Genetics and Laboratory Diagnostics Center for Jewish Genetics Center for Neuroscience and Cell Biology University of Coimbra Center for Rare and Undiagnosed Diseases (CeRUD) Centre de référence des maladies rares Centre for Health Ecologies and Technology Centre for Personalised Immunology & Australian Phenomics Facility Centre for Rare Diseases, Dept. of Pediatrics, SMS Medical College, Jaipur 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 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 Centrum för sällsynta diagnoser Sydöst Cetatea Voluntarilor Arad Change Team Africa Charitable Foundation "LA BEAUTY" Charitable Foundation"Sister Dalila", PHURDA Charity Foundation Nuzhna Pomoshch (Help Needed) Children's Hospital of Shanghai China Dolls Care and Support Association Chinese Organization for Rare Disorders Chloes Fight Rare Disease Foundation CHNO des XV-XX CIBERER CIPF Centro de Investigación Príncipe Felipe 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 Comunidad Prader-Willi en Uruguay Consiglio Regionale della Toscana 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 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 CTI Clinical Trial and Consulting Services (USA) Cure Sanfilippo Foundation Cyprus Alliance for Rare Disorders (CARD) Cystic Fibrosis Slovenia Cystinosis Research Network Czech Association for Rare Diseases (Ceska ascociace pro vzacna onemocneni) D'Genes Danielle's Hope DDX3X Foundation DEBRA Bosna i Hercegovina DEBRA CZ debra of America (The Dystrophic Epidermolysis Bullosa Research Association of America) DEBRA Slovenia DEBRA UK Delaware HOSA Département Génie biologique ULT 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 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 Drexel College of Medicine Duke Consortium for Inflammatory Breast Cancer (IBC) Dystonia Europe & ARD - Associazione Italiana per la Ricerca sulla Distonia E.D.S AWARENESS IRELAND EB Haus Austria Eclas - Ensemble contre l'amyotrophie spinale de type 1 Egyptian Group for Orphan Renal Diseases (EGORD) 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 EMUVCO Estonian Agrenska Foundation EURORDIS-Rare Diseases Europe Facultad de Medicina de la universidad central 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 Fairleigh Dickinson University School of Pharmacy Industry Pharmacist Organization (USA) FD Warriors and The FD Foundation FECHER Federação das Doenças Raras de Portugal Federación Argentina de Enfermedades Poco Frecuentes - FADEPOF Federación Colombiana de Enfermedades Raras (FECOER) 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) FEVEPOF FEDERACION VENEZUELA Fight For Rare Disease, Inc Filières de santé Fimatho et G2M Filières de Santé Maladies Rares de l'hôpital Necker FIMATHO - Filière de Santé des Malformations Abdomino-Thoraciques Findacure FIORI DI CAMPO FIPAN (Asociación Argentina de Fibrosis Quística) 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 FOP Australia FOP Friends Forum Seltene Krankheiten Foundation for Neuromuscular Support in Nigeria and Nigerian Red Cross Society, Unilag Detachment Foundation Orphanhealthcare FoxG1 Foundation Australia Friends of Abu El Rish CH Society - جمعية أصدقاء مستشفيات أبو الريش للأطفال Friends of FSH Research Fund Viljem Julijan - Eksena Society 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 Lovexair Fundacion Niños de Cristal (OI) Fundación para la Prevención de la Discapacidad, Fundis Fundación Red Sanfilippo Fundación Retina España Fundacion Teleton Fundacion Vida Suenos y Esperanza Fundacja Sanfilippo FUPIER-Fundación GADS Global Aortic Disease Support Garrett the Grand - Batten Fighter GEDR Brasil Genetic and Developmental Medicine Clinic Genetic and Rare Disease Network Genetic Support Network of Victoria Genética Médica Genetics Department - Hackensack University Medical Center GENEXT Diagnóstico Molecular Genodermatoses Network Georgian Foundation for Genetic and Rare Diseases German Archaeological Institute GIST Chile Glasgow University Rare Disease Association Great Ormond Street Hospital for Children GREEK ALLIANCE FOR RARE DISEASES Groupe d'Entraide des Syndromes d'Ehlers-Danlos 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 Gruppo Consultazione Malattie Rare Liguria GUaRDIAn Consortium Guardian Hands Foundation Hacettepe University Harmony 4 Hope HARSO - Organisation for Rare Diseases and Disabilities in Finland HARVINAISET VERKOSTO - The Finnish Network for Rare Diseases Haude Elementary School HCU Network Australia Helen DeVos Children's Hospital HELLENIC MYASTHENIA GRAVIS ACOSSIATION Hemophilia Society Ahmedabad Chapter Hepar Centar Bitola Heroic Inner Kids HHT ONLUS High Hopes -Pediatric Therapy Center HIPOFAM HKARD Hong Kong Alliance for Rare Diseases Hodgkin en non-Hodgkin vzw Hong Kong Alliance of Patients' Organizations Hope Alive Ministry Hôpital Européen Marseille Hôpital Necker- Enfants malades Hospital of Lithuanian University of Health Sciences Kauno klinikos Hospital de Especialidades Pediátrcias Hospital de Niños de Córdoba Hospital Pequeno Príncipe Hospital Santa Marcelina Hunter Medical Research Institute Hunter Syndrome Foundation i3S - Instituto de Investigação e Inovação em Saúde IIH UK Il Cortile di Edy Il Divo Korean Divas IMAGINE ID Immunology, Asthma and Allergy Research Institute, Tehran University of Medical Sciences Indian Organisation for Rare Diseases Indian Society for Clinical Research Indonesia CARE for RARE Diseases Indonesia Rare Disorders InfoMaladiesRares 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 Investigación Sanitaria INCLIVA Instituto de Microcirugía Ocular (IMO) Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado Instituto Nacional de Saude Ricardo Jorge Instituto Vidas Raras Inter-regional support center for patients with aniridia "Iris" Intergruppo Parlamentare per le Malattie Rare International Federation of Medical Students (IFMSA-Jo) International Foundation for Guillain-Barre Syndrome International School Geneva IOMC Alfred Rusescu IPASSI IRCCS - Istituto di Ricerche Farmacologiche Mario Negri. Islah's Sparkle Appeal ISMRD ISTITUTO COMPRENSIVO "L. PILLA" - VENAFRO Jennifer's GP House jmstest 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 Keeping Chronic Pretty Kids Connect Kindness for Kids Kingston University Klippel-Feil Syndrome Freedom Kokoro Kids Korean Organisation for Rare Diseases KRIKOS ZOIS GREEK ASSOCIATION FOR INHERITED METABOLIC DISEASE KuvaWorld for Children l'Association Kemil et ses amis l'espérance Fibromyalgia Organisation (LEFIFO) L'institut Pasteur de Tunis & Association la Recherche en Action & Association des jeunes chercheurs de l'IPT L2AME (lutte contre la Leucémie Aigue et l'Aplasie Médullaire chez l'Enfant) La Famille Kiroul La Federazione Malattie Rare Infantili (Torino) LA PURISIMA FRANCISCANAS VALENCIA Laboratório de Bioquímica Genética - CNC e FMUC, Universidade de Coimbra. Latvian Alliance for Rare Diseases Lebanse Association for Neuromuscular Diseases Les Athlés Solidaires Les filières de santé maladies rares de Trousseau 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 Llywodraeth Cymru | Welsh Government LND Famiglie Italiane Onlus 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 Malalties Rares a Andorra, grup per afectats y familiars d'afectats MALAYSIAN RARE DISORDERS SOCIETY MALTA ALLIANCE FOR RARE DISEASES (MARD) 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) MCST (Almaarefa college for science & technology ) medicine MDS Foundation MED13L Foundation Medical Genetic Service of the Perugia Hospital Meir Medical Center Melbourne Health Ministry of Health Ministry of Health of the Republic of Slovenia Mission College Prep Mitocon ONLUS MKSE mitteldeutsches kompetenznetz für seltene erkrankungen Molly's Voice Morbus Osler Selbsthilfe e.V. MSD Action Foundation Multiple Enchondromatosis; Finding Ollier's Mundo Marfan Latino - Conectiva Municipalidad de La Matanza Muscular Dystrophy Association of NZ My Normal | storytelling for rare disease health My PKU Awareness Myositis Support and Understanding Association, Inc. Myotonic Dystrophy Foundation Myotonic Dystrophy Support Group National Alliance for Rare Diseases of R. Macedonia National Alliance for Rare Diseases Support Malta NATIONAL ALLIANCE OF PEOPLE WITH RARE DISEASES (NAPRD) 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 Guard Hospital and Saudi Society of Medical Genetics. National Hospital of Pediatrics in Hanoi National Institute of Technology Calicut National Organization for Rare Diseases, 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 ZEALAND ORGANISATION FOR RARE DISORDERS 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 Northern Ireland Rare Disease Partnership NORWEGIAN DIRECTORATE OF HEALTH Norwegian Federation of Organizations of Disabled People (FFO) Norwegian Federation of Organsiations of Disabled People Norwegian National Advisory Unit on Rare Disorders OcuMel UK Office for Rare Conditions 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 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 PEMERAC (Programa de Educación Médica en Enfermedades Raras y Anomalías Congénitas) Perthes Kids Foundation 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 Pituitary Community South Africa Plataforma Malalties Minoritàries Polish CF Foundation MATIO Polish MRKH Support Polish National Forum on the Treatment of Orphan Diseases - ORPHAN Pompe Deutschland e.V. Pontificia Universidad Javeriana Colombia Pontificia Universidad Javeriana Colombia Prader Willi Vlaanderen Pro Rare Austria, Allianz für seltenen Erkrankungen Procrece Programa de Pesquisa Neonatal Progressive Supranuclear Palsy - PSP Warwickshire (Facebook Support Group) ProRaris Providence Middle School PubhD Leicester Pulmonary Hypertension and Scleroderma Patient Association Pulmonary Hypertension Association PURA Syndrome Foundation PVNH Support & Awareness Quaid-i-Azam University Queen Elizabeth Hospital Birmingham Charity RAAR v.z.w. RADIORG - Rare Diseases Organisation Belgium Rare and Orphan Diseases Patient Associations Platform in Turkey Rare Disease Association "Caladrius" Rare Disease Brisbane Rare Disease Film Festival Rare Disease Foundation Rare Disease Foundation of Iran Rare Disease Ghana Initiative Rare Disease Info Swap Rare Disease Kenya Rare Disease Legislative Advocates Rare Disease Salzburg Rare Disease UK Rare Diseases Croatia Rare Diseases Denmark (SJAELDNE DIAGNOSER) Rare Diseases Hungary - Hungarian Federation of People with Rare and Congenital Diseases Rare Diseases India Rare Diseases International RARE DISEASES IRELAND Rare Diseases Observatory - University of Brasilia Rare Diseases Sweden (RIKSFÖRBUNDET SÄLLSYNTA DIAGNOSER) Rare Diseases TRC & Cambridge Rare Disease Network Rare Disorders Society (Singapore) Rare Friends Rare Genomics Rare Genomics Institute Israel Rare Voices Australia Ltd. Raríssimas Real Experience Books Rebecca Morrish Red de Enfermedades Raras de Yucatán REFERENTE AISMAC CATANIA Regional Directorate for Health Regione Siciliana Dipartimento Attività Sanitarie e Osservatorio Epidemiologico Regroupement québécois des maladies orphelines RespiriAMO Retina Uganda RETT UK ROMANIAN NATIONAL ALLIANCE FOR RARE DISEASES 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” Rutgers University Rutgers University Biomedical and Health Sciences and Rutgers Student DIA Chapters Rylan Chen Sahabat Pierre Robin Sequence (PRS) Same but Different Samskara Samy Arman & Tuning Life Society San Marcos Elementary- Mrs. Lyon & Mr. Chapman 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 School of Biological Sciences, Royal Holloway University of London Scleroderma Foundation Scoala gimnaziala " Gheorghe Lazar" Seguimos viviendo Selbsthilfegruppe SPRUE / ZÖLIAKIE im Großraum Mainz-Bingen Service de génétique clinique Servicios Integrales para la Atención y Prevención de la Discapacidad (SINDIS) Sheba - Academic Medical Center Hospital Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences Sheikh Hamdan Bin Rashid AL Maktoum Award for Medical Sciences 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 Smith Ford Solidarité Handicap "Autour des maladies rares" Spierziekten Vlaanderen vzw Spinal CSF Leak Foundation Starfish Orphaned Charity Steve Waugh Foundation Stiff Person Syndrome Support Group Student Parliament of the Faculty of Pharmacy (MPSA) 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 test test testjms The Blackpool Fylde & Wyre Haemochromatosis Support Group The Champ foundation The FPIES Foundation The John Curtin School of Medical Research The LAM Foundation The Masters School The Nathan Asher Foundation The Ocular Motor Apraxia Community The Patient Experience Project The Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR) 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) Tom Wahlig Stiftung Jena Transform My Beauty TreatmentDiaries.com TRIPOLI CHILDREN HOSPITAL Tuberous Sclerosis Complex New Zealand Türkiye Anne Çocuk Ergen Sağlığı Enstitüsü U.R. Our Hope U.S. Pain Foundation UAE Genetic Diseases Association UC Davis Institue for Regenerative Cures UK Renal Registry Un Milagro Para Dos Angelitos UN SOFFIO DI SPERANZA. IL SOGNO DI EMANUELA ONLUS UNIAMO - FEDERAZIONE ITALIANA MALATTIE RARE Unidad Docente de Medicina Familiar y Comunitaria Universidad Autonoma de Queretaro Universidad de Cartagena Universidad de Murcia UNIVERSITA' DEL MOLISE University College London Hospitals NHS Foundation Trust (UCLH) University of California San Francisco/Catalyst Program University of Glasgow University of Glasgow University of Karachi University of Minnesota University of North Carolina Greensboro University of Oxford University of São Paulo at Ribeirão Preto College of Nursing University of Wolverhampton University of York and York Teaching Hospital UNSED (Union Nationale des Syndromes d'Ehlers-Danlos) UTM Pre-Medical Club Vaasan Seudun Yhdistykset ry Vaincre les Maladies Lysosomales VASCAPA VERENIGING SAMENWERKENDE OUDER EN PATIËNTENORGANISATIES (VSOP) Viapath Vilnius University Hospital Santariskiu Klinikos Vranch House School WA Branch of the Human Genetics Society of Australasia WAGR Warriors WAGR Warriors WE ARE UNIQUE ETHAN FOUNDATION werathah Werathah Jordan World Without GNE Myopathy (India) Worldwide Syringomyelia & Chiari TF Young Lungs Young Patients Committee (YPC) of TNA the Facial Pain Association Zavod 13 Всероссийское общество орфанных заболеваний Теплица социальных технологий ФОРУМ ПАЦИЕНТОВ С РЕДКИМИ ЗАБОЛЕВАНИЯМИ (SPIPORZ)
