Select your organisation —Please choose an option— 'Victor Babes' University of Medicine and Pharmacy, Timișoara "SOURCE" Foundation #BastaPoco #RareDisease 2nd junior high school of Ioannina for Intercultural Education 2nd Primary School of Nea Erythraia 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 Cure for Sophia and Friends 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 VISIÓN ESPAÑA Acción y Cura para Tay-Sachs - ACTAYS Achalasia Action Achieve Pediatric Therapy and Rehab ACHSE e. V. Allianz Chronischer Seltener Erkrankungen Acia Acıbadem Üniversitesi Nadir Hastalıklar Günü Sempozyumu ACMT-Rete per la malattia di Charcot-Marie-Tooth OdV Acorn Analytical Services (UK) Ltd Acromegaly Canada ACTG-CRO Action Duchenne Action for A-T Actitud Dravet Argentina ACTS Accounting 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 Adenoid Cystic Carcinoma Organization Int'l Adenomyosis Advice Association ADERIS "Asociación de Discapacidad, Enfermedades Raras e Integración Social" Adisen - Asociación Nacional de Addison y Otras enfermedades Endocrinas admedicum 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) African Americans with Ataxia Association 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 AIAF APS ASSOCIAZIONE ITALIANA ANDERSON-FABRY Aicardi Goutieres Syndrome Advocacy Association (AGSAA) Aicra Associazione Craniostenosi ETS Aidel22 AILE ONLUS AIMORA CENTER Aiomix AIRCS ODV AIRM - Italian Association for Mitochondrial Research AISA LIGURIA ONLUS Associazione italiana per la lotta alle Sindromi Atassiche AISAC Onlus Aislinn's Wish Foundation AISMAC AISMME Associazione Italiana Sostegno Malattie metaboliche Ereditarie Aps AISNAF onlus AKABE (ASSOCIATION KABUKI BELGIUM) Al Jalila Children's Speciality Hospital Al Shifa Trust Eye 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 Germany Alexion Pharma Spain Alexion Pharmaceuticals Alexion Spain & Portugal Alexsol Health 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 All Saints School Winter Park All-Russian Society for Phenylketonuria AllheART Alliance Algérienne contre les Maladies Rares Alliance des Maladies Rares au Maroc Alliance for Cryoglobulinemia Alliance for Pulmonary Hypertension Alliance for Pulmonary Hypertension 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 ALS ONE Alternating Hemiplegia of Childhood (AHC UK) Ama Fuori dal Buio AMAR 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 Brain Coalition 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 Amiloidosis Costa Rica AMMA Andorra Amour Fund Amri ONLUS Amy and Friends AnDDI-Rares ANDO Portugal Andrómeda Radio ANGEL Angel Flight NE 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 ASFAPE ASFEMA (Asociación de Familias con Enfermedades Metabólicas de Madrid) Ashua Asia Pacific Alliance of Rare Disease Organisations Asoc. Puertorriqueña de Hemofilia Asociación 11qlatinoamerica - Síndrome de Jacobsen 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 Enfermos y Familiares con Hipertensión Intracraneal/Pseudotumor Cerebri Idiopática/Pseudotumor Cerebri 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 del Síndrome de la Hemiplejia Alternante (AESHA) Asociación Española Irf2bpl Asociación Española para el Estudio de los Errores Congénitos del Metabolismo (AECOM) Asociación Gaucher de México Asociación Leonesa de Enfermedades raras Asociación Mexicana de Hipertensión Arterial Pulmonar, A. C. 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 Síndrome Phelan-McDermid Asociación Soy EH -Rio 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 BRASILEIRA DE PORFIRIA - ABRAPO Associação capixaba de Apoio às Pessoas com Doenças Raras Associação de Apoio aos Pacientes e Familiares de Trombocitopenia Imune PTI BRASIL Associação de Paraparesia Espástica Hereditária e Correlados do Brasil - Aspec Brasil Associação Kokua, cães de ajuda social Associação Portuguesa de Neurofibromatose, APNF Associação Portuguesa dos Doentes de Huntington (APDH) 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 contre les maladies mitochondriales (AMMi) 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 patients with multiple myeloma, myelodysplastic syndrome and other rare blood diseases in Bosnia and Herzegovina (Myeloma in BiH) Association of patients with multiple myeloma, myelodysplastic syndrome and other rare blood diseases in Bosnia and Herzegovina (Myeloma in BiH) 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 takayasu france 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 COLLAGENE VI ITALIA APS ASSOCIAZIONE COLLAGENE VI ITALIA APS 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 Italiana Sindrome X-Fragile Associazione Linfa Odv Associazione Nazionale Alfa1-at 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 Porpora Trombotica Trombocitopenica 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 Atlantis Health 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 AVM Alliance AVM Research Foundation 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 BCAP31.org 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 BELOvEDS, A Nania Foundation Inc. Ben's Friends Patient Communities Beomed Translation Team - Network of Freelance Translators Best Friends Foundation Bethesda Physiocare, Inc BETM CONSULTANTS INC. Better Future 4 U 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 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 Birth and Breastfeeding in Color Inc Biruni University Blind Early Services TN (BEST) Bloom Syndrome Association 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 Broadstreet HEOR Bruin Allies for Duchenne Brunswick KiDDS Pediatric Dentistry BSeen & Heard Bulgarian Huntington Association Bulgarian Organisation of Voluntary Blood Donation Bulgarian Organization of Voluntary Blood Donation Business Intelligence Group 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 Autoinflammatory Network Canadian CdLS Foundation Canadian Fabry Association Canadian Immunodeficiencies Patient Organization (CIPO) Canadian Organization for Rare Disorders Réseau Canadien des Maladies Rare (RCMR)|Canadian Rare Disease Network (CRDN) | Réseau Canadien des Maladies Rare (RCMR) Cancer Warrior Team CannaCrawlersAtlanta CapeAble Weighted Products 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 de Saúde Nossa Senhora dos Raros Casa Famiglia Rosetta Casa Hunter Casa Rara Atípica 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 CCHS UK 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 Ichthyosis Related Members Foundation India 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 Center for Rare Neurological Diseases at Mass General Hospital Centre de référence des maladies rares Centre for Health Ecologies and Technology Centre for Omic Sciences, Islamia College Peshawar Centre for Omic Sciences, Islamia College Centre for Personalised Immunology & Australian Phenomics Facility Centre for Rare Disease, JK Lone Hospital 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 Infantil La Esperanza 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 "Orphanni Synytsi" Charitable Foundation"Sister Dalila", PHURDA Charity Foundation Nuzhna Pomoshch (Help Needed) Charlie's Garden 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) China DMD care and Support association Chinese Organization for Rare Disorders ChitChatDigital LLC Chloes Fight Rare Disease Foundation CHNO des XV-XX Chronic and Rare disease foundation Chronic Illness Alliance Chronic Pain Partners/EDS Awareness CHUV, Lausanne University Hospital CIBERER CIDP Italia ONLUS CIIC 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 CLD, Inc. 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 COLECTIVO LOS PACIENTES IMPORTAN Colegio Amor de Dios de Arévalo Collected Group Collectif Drepanocytose 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 Compass Strategy and Research, Inc. Comune di Gattatico Comune di Polignano a Mare COMUNE DI ZOLA PREDOSA Conectiva.Lat Congenica Congenital Hyperinsulinism International 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 Constellation - troubles héréditaires du tissu conjonctif 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 ADOA Foundation Cure AHC Cure For Claire West Midlands C.I.C. Cure MCOPS12 Cure Sanfilippo Foundation Cure Vitiligo CURED Foundation CureGRIN Foundation Currie Primary School Cushing's Support & Research Foundation Customer Faithful CVS Speaks Cyagen Cycle Pharmaceuticals Cyprus Alliance for Rare Disorders (CARD) Cystinosis Research Network d.Jamal ahmad rashid Pediatrics Teaching Hospital Sulaimanyah Iraq D'Genes D2V Clinical 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 Defeat Duchenne Canada DEGETHA e. V. Delaware HOSA Delta Medical den i asbl syndrome de Marfan Luxembourg Denise Gang Département Génie biologique ULT Department of Biological Sciences, Royal Holloway University of London Department of Genetic Engineering, SRM University Department of Genetic Medicine, Faculty of Medicine, King Abdulaziz University Department of Medical Genetics, Cerrahpasa Medical School, Istanbul University-Cerrahpasa Department Of Pediatrics, Civil Hospital Karachi and Professional Development Centre, Dow University Of Health Sciences Deutsche Gesellschaft für Gentherapie e.V. Dhiti Omics Technologies digiD8 DIMED Medicine Department of the University of Padua Dimus Chile 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 DMD Warrior DNA Recruitment DOCAS (District Outreach for Care and Support) DOCMED.ar Dott.ssa Ketty Perrotta Dr Sarah Khaw Dr Shroff's Charity Eye Hospital Dr. Alnadi Clinic for Gastroenterology and Liver diseases Dra. Catalina Espina - Pediatra 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 Duchenne UK Duke Consortium for Inflammatory Breast Cancer (IBC) Dup15q Australia DupMECP2 Lasst uns MDS heilen Dúshlán Dynamicsoft E&ILCA E&ILCA Early intervention Association EB Haus Austria Eclas - Ensemble contre l'amyotrophie spinale de type 1 ECS North Atlantic LLC 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 Organisation e.V. Ehlers-Danlos Organisation e.V. Ehlers-Danlos Support Group of Jacksonville Ehlers-Danlos Syndrome Canada Ehlers-Danlos Syndrome Vermont Ehlers-Danlosův syndrom a syndrom hypermobility 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 Empowered Together 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) ERN-Skin 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 FAR - Foundation for ARID1B Research 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 FEEHM Federación Española de Enfermedades Hereditarias del Metabolismo FEMPA- Fundación de pacientes para pacientes con esclerosis múltiple de Bogotá Fenpof Chile - Federación de Enfermedades Poco Frecuentes Ferrer FEVEPOF FEDERACION VENEZUELA FH Europe FH Europe Foundation 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) Firalis Molecular Precision 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 FOKUS Patient FOKUS Stargardt - Hilfe bei Morbus Stargardt 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 Formula of life Forum Campano delle Associazioni di Malattia Rara Forum Seltene Krankheiten FORUM TOSCANO ASSOCIAZIONI MALATTIE RARE aps Forward/Together 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 Fragile X International 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 de Hipertensión Pulmonar de la Rep. 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GeNet - GEnetic NETwork Genetic Alliance UK Genetic and Developmental Medicine Clinic Genetic and Rare Disease Network Genetic Cures for Kids Inc. Genetic Support Foundation Genetic Support Network of Victoria Genetics Department - Hackensack University Medical Center Genetics Otago Genexplore Diagnostics & Research Centre Pvt. Ltd. GENEXT Diagnóstico Molecular Geneyx GENFIT GenoMed Genomenon GenomSys Geoergian Society of Medical Geneics and Epigenetics Georgian Foundation for Genetic and Rare Diseases Georgian Rett syndrome and other Rare Diseases Association Georgian Society for Inborn Errors of Metabolism (GSIEM) German Archaeological Institute Gesellschaft für Mukopolysaccharidosen (MPS) e.V. GettingUp.Org GFB Onlus GHC Genetics GI MNM Non Déterminées AFMTéléthon Girl Scouts of Northern California GIST Cancer UK GIST Chile Gitelman Syndrome Uk Give.Asia Glasgow University Rare Disease Association Gli Equilibristi hibm Global Diagnostic Solutions Ltd. Global Shapers Paris hub GlobalSkin (IADPO) GNAO1 España Godvild GoPI3Ks (Genetic Overgrowth PI3K Support) GoPI3Ks (Genetic Overgrowth PI3K Support) GoPI3Ks (Genetic Overgrowth PI3K Support) Gordey Charity Foundation GPT2Deficiency.org Grace Science Foundation Great Ormond Street Hospital for Children GREEK ALLIANCE FOR RARE DISEASES Groupe d'Entraide des Syndromes d'Ehlers-Danlos Groupe de recherche intersciplinaire sur les maladies neuromusculaires Gründung Zentrum für Interstitielle und Seltene Lungenerkrankungen (ZISLE) Grupo de Pessoas, familiares e amigos com Doenças Raras do município de Uberlândia e região Grupo Lázaro Esclerosis Múltiple Grupo Paraná de Síndromes e Doenças Raras Gruppo Familiari Beta-Sarcoglicanopatie GFB Odv GSI Lab (Genomik Solidaritas Indonesia) GTS seguros GUaRDIAn Consortium Guardian Hands Foundation Gulhane Faculty of Nursing GVHD Alliance H.O."VERITTAS" SRBIJA H4B Boston Hacettepe University HAE Junior Haemophilia Foundation Of Nigeria Hagamos visible lo invisible Hairy Cell Leukemia Foundation Haiti Cholera Research Funding Foundation Inc USA HCRFF Hamad Medical Corporation Hamartome hypothalamique épilepsie France Harmony 4 Hope HARSO - 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Pompe awareness 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 HSAN IV Foundation Humans With Knobloch Syndrome Hunter Medical Research Institute Hunters CMT4B3 Research Foundation HWTH Health Awareness Campaign Hydrocephalus Association Hyper IgM Foundation Hypersomnolence Australia Hypersomnolence Australia Hypertrophic Olivary Degeneration Association (HODA) HypoPara Support & Advocacy Inc I DREAM TOO TRUST I Thrive With CVID and CVIDiva i3S - Instituto de Investigação e Inovação em Saúde IBIMA-RARE (IBIMA) IC "RADICE-ALIGHIERI"CATONA_SCUOLA SECONDARIA DI 1° GRADORC ICON ICVS - Life and Health Sciences Research Institute Ifopers Latinos IFPA IgA Nephropathy Foundation Igenomix Brasil II. osnovna škola Čakovec IIH UK IKEA Malaysia IKRIS PHARMA NETWORK Il Cortile di Edy Il Divo Korean Divas Il Tuffatore İLKADIM 15 Temmuz Şehitler İmam Hatip Ortaokulu Illness Challenge Foundation Illuminate IMAGINE ID Immedica Pharma AB Immune Deficiencies Foundation Australia Immune Deficiencies Foundation Of Australia Immune Deficiencies Foundation Of Australia In Our Arms Blog INCLIVA Health Research Institute Inclusion Finland KVTL ry, Rare disease centre Norio INDEPF Indian Organisation for Rare Diseases INDIAN PHARMACY GRADUATES ASSOCIATION - 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Kallmann syndrome patient support group Kalsekar Technical Campus, School of Pharmacy Karachi Laboratory Diagnostic Center KARES Foundation Karpos Technologies KAT6A BELGIUM ASBL KAT6A Foundation KAT6A Foundation Austria Katchoua Foundation Kathmandu Center for Genomics and Research Laboratory (KCGRL) Kawasaki Disease Foundation Youth Kazakhstan Sanofi Genzyme KBG Foundation KBG Foundation KBG Foundation KBG Syndrome Association KD Downunder Support Group Keeping Chronic Pretty Kennedy's Disease Association Keratoconus Group KGI Students for Rare - NORD Chapter Khim Lamichhane Kazi KIBGE, University of Karachi Kiddo Physio KIDS Albania KIDS Bari Kids Connect Kids In Motion Pediatric Therapy and Wellness Kindness for Kids King Saud Medical City King's Day Out, LLC Kingston University Kleine-Levin Syndrome Foundation Klippel-Feil Syndrome Freedom KoHHA Organizasyonu Kongenitaler Hyperinsulinismus e.V. Korean Organisation for Rare Diseases KORU Medical Systems KRIKOS ZOIS GREEK ASSOCIATION FOR INHERITED METABOLIC DISEASE Kurdistan rare disease center Kuwait Medical Genetic Center l'Association Kemil et ses amis l'espérance Fibromyalgia Organisation (LEFIFO) L’état de la recherche au GRIMN en trois temps: ARSCS, DM1 et DMOP L2AME (lutte contre la Leucémie Aigue et l'Aplasie Médullaire chez l'Enfant) La Famille Kiroul La Force DMD La Gemma Rara LA PURISIMA FRANCISCANAS VALENCIA Laboratório de Biomedicina Mitocondrial e Teranóstica - CNC e FMUC, Universidade de Coimbra. Laboratorio Internacional de Investigacion sobre el Genoma Humano (LIIGH), UNAM Laboratorio Internacional de Investigación sobre el Genoma Humano, LIIGH, UNAM Laboratory of Inborn Errors of Metabolism Laboratory of Inborn Errors of Metabolism/UFRJ Labs4Free Lafora Corrientes LAM Australia Research Alliance Language centre Lingua Larger Than BWS Latvian Alliance for Rare Diseases Laurence Simons Search Le ali di Camilla Le chevalier Noam LeanGene Lebanse Association for Neuromuscular Diseases Lega Italiana Arbitri di Rugby Leo Club of Palpa LMC Les Athlés Solidaires Les filières de santé maladies rares de Trousseau Les petits Mecp2 Lesotho Medical Students' Association LGD Alliance Europe LGDA LGMD Awareness Foundation, Inc Li Fraumeni Syndrome Association Canada Liam's Lighthouse Foundation Libyan Biotechnology Research Centre Libyan Medical Students and Young Doctors Association - Misurata 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) light of hope and love for africa charity lightScience Lincoln Way Area Special Education Lindsey Garcia/Dempster Family Foundation Lipodystrophy United Lithgow Medical Clinic Little Miss Hannah Foundation Little Zebra Fund Litty Ligo Community Network Welsh Government|Llywodraeth Cymru | Welsh Government LND Famiglie Italiane Onlus LOH GUAN LYE SPECIALISTS CENTRE London North Genomics Laboratory Hub Looms for Lupus Love for Kids Inc Loving Luca Foundation Lucy's Warriors Foundation Luka The Lion Foundation Luminex Corp Lupus Alert Lyme Fight Foundation Lymphangiomatosis and Gorham's Disease Alliance - Europe Lymphoma and Related Diseases Registry Lynk Up World Lyons Tech Inc Lyphangiomatosis and Gorham Disease Alliance Lyphangiomatosis and Gorham Disease Alliance Lysosomal & Rare Disorders Research & Treatment Center (LDRTC) LYSOSOMAL STORAGE DISORDERS SUPPORT SOCIETY LYSOSOMAL STORAGE DISORDERS SUPPORT SOCIETY- INDIA Ma'an Center for Special Education Macedonian Medical Students' Association (MMSA Macedonia) Madres Kabronas Maistrachi per Davide Malaysia Lysosomal Diseases Association MALAYSIAN RARE DISORDERS SOCIETY Mamata medical college Mamo Papu Mansoura University - Faculty of Medicine MAP Patient Access MaRaVal - maladies rares valais - seltene krankheiten wallis MaRaVal - maladies rares valais - seltene krankheiten wallis Maria Ruggeri Onlus Marigold Foundation MaRIH French network for immunohematological rare diseases Marshfield Clinic Health System Mashael Al-SHam School Mass Communication Department - American University of Sharjah Mass Diagnostics Egypt MassBio Masters Level Social Work Organisation (MSWO) Masters Speciality Pharma Mastocytosis Society Canada MasVisibles Maternal Alloimmunization Foundation Maternal Pituitary Support Mayan Technologies Inc. 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MORE Community MORE Community Mountain States Regional Genetics Network Move2Advocate Movement Disorders NPC MPN Advocacy & Education International MPN Alliance Australia MPS JAJAX A.C. MPS Society Muitos Somos Raros Mundo Marfan Latino Municipal High School ,,Mirce Acev'' Municipalidad de La Matanza Muscular Dystrophy Association of NZ Muscular Dystrophy Canada Musica Senza Confini Mustafa Kiriş Secondary School storytelling for rare disease health|My Normal | storytelling for rare disease health My PKU Awareness Myasthenia Gravis Association of Queensland Myaware Myhre Syndrome UK & Europe Myositis Support and Understanding Association, Inc. Myotonic Myotonic Dystrophy Support Group Myotubular Trust Myriad Genetics Myrovlytis Trust Nacionalna organizacija za rijetke bolesti Crne Gore / The National Organization for Rare Diseases of Montenegro Nadir Hastalıklar Ağı (Rare Diseases Network of Turkey) Naevus 2000 NAEVUS ITALIA Namibian Alliance for Rare Diseases Nanomed Spain Narcolepsy UK National Academy of Young Scientists (NAYS) National Alliance for Rare Diseases of R. Macedonia National Alliance for Rare Diseases Support - Malta 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 Ataxia Foundation 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. 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University of Guanajuato New York City Health & hospitals/Metropolitan New York Police Department (NYPD) New Zealand Pompe Network Newcastle University Newcastle University Next Generation of Cystinosis NF AWARE NIGERIA NF2 PROJECT APS NGO "Rare Diseases of Ukraine" NGO Committee for Rare Diseases NGO KARKINAKI NHS Grampian Niemann Pick Argentina NIHR Biomedical Research Centre at Moorfields Eye Hospital NIHR BioResource NIHR Rare Diseases Translational Research Collaboration NOC Nätverket för ovanliga kromosomavvikelser NOI Huntington North Alabama Sickle Cell Foundatio North Florida School of Special Education Northern Ireland Rare Disease Partnership Northern Middle School Northwest PANDAS/PANS Network (NWPPN) Norwegian Federation of Organizations of Disabled People (FFO) Norwegian National Advisory Unit on Rare Disorders Not Without Delicious Nova International Diagnostics Novo Nordisk Haemophilia Foundation Nutrix Personnel NYC Health + Hospitals/Metropolitan OASYS NOW 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 Online Psychotherapist OpenReuma Oraculum Ltd Organización de Pacientes con Hipertensión Pulmonar"Llapan kallpa" Organización Mexicana de Enfermedades Raras ORGANIZATION FOR RARE DISEASES INDIA Orphan Reach Limited Orphan Reach Ltd ORPHAN-NPC (ГО "ОРФАННІ-НПС") Orphanet Germany Orphanet Italia Osservatorio Malattie Rare Osteogenesis Imperfecta Foundation OSTUNI RUNNER’S Oxalosis & Hyperoxaluria Foundation Oxford-Harrington Rare Disease Centre Özel İbn-i Sina Hastanesi Osmaniye PacBio Pacientes Autoconvocados Pacific Northwest Research Institute PAHSSc Pain Advocate Warriors Palmerston North City Library Panama AYOUdas Panama Pancyprian Association for Rare Genetic Diseases "Unique SMILES” PanDI PANS PANDAS UK PANTHERx Rare Specialty Pharmacy Papillon Therapeutics Paraparesia espastica hereditaria argentina Parent Project aps Parent to Parent USA Parent to Parent USA Parental project to help patients with Duchenne / Becker muscular dystrophy Parexel Parexel Parkinson Cameroun Partner Rare Passionate Kasi Chix Foundation Pathophysiology of striated muscle group_ DSB_University of Padua Patient Empowerment Network Patient Voices Matter Patto Trasversale per La Scienza PCDH19 Alliance Peckham, Inc. Pediatria Futura -Future in pediatrics Pediatric Endocrine and Diabetes Unit - Sultan Qaboos University Hospital PEMERAC (Programa de Educación Médica en Enfermedades Raras y Anomalías Congénitas) PEMEX Central South Hospital People with PPFE PERI Periodic Paralysis Association PERSATUAN SINDROM PRADER-WILLI MALAYSIA Perthes Kids Foundation Pesquisa Neonatal Corrientes Argentina PFIC Advocacy and Resource Network Pharmaxis Group Pharming Group N.V. phaware global association Phelan-McDermid Syndrome Foundation Australia PhenoTips Philippine Society for Orphan Disorders, Inc. (PSOD) PHO BIOMED LAB PHURDA physIQ Pingrup Community Resource Centre PINNT PIP-UK PIP-UK Poland Syndrome Support Pituitary Community South Africa Pituitary Foundation Ireland PKD Australia PKU Heroes Plasma Man Campaign Plataforma Malalties Minoritàries Plateforme de coordination des maladies rares de la Guadeloupe - KARUKERARES Platelet Disorder Support Association Platinum Team Foundation / Fundacja Platynowa Drużyna POLAND SYNDROMIGHTIES Policlinico Tor Vegata - Associazione Sindrome di Marfan Policondritis Recidivante Apoyo e Investigación Polish Association for People Affected by AHC ahc-pl Polish CF Foundation MATIO Polish MRKH Support Polish National Forum on the Treatment of Orphan Diseases - ORPHAN POMC ISLAND Pompe Alliance Pompe Deutschland e.V. Pompe Support Network Pontificia Universidad Javeriana Colombia PPD Portugal Prader Willi Vlaanderen Prader-Willi Syndrome Association (USA) Praktek Mandiri Dr Rozalina Loebis Sp.M(K) Prestige Nursing and Homecare Services Pri Oliveira Fotografia Prime Global Principled Research Resources L3C PrInt Hall at The Student Housing Company PRISMS Pro Rare Austria, Allianz für seltenen Erkrankungen Procrece Prof. dr. Stanislaw Popowski Regional Specialized Children's Hospital in Olsztyn Prof. dr. 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Onlus - Amici di Sofia VON WILLEBRAND Santa Fe (Argentina) Vranch House School vzw Overdruksyndroom en Tarlov Cysten WA Angelman Syndrome Association WAGR Warriors Wake Up Narcolepsy (WUN) Ward Memorial Hospital Warsaw Genomics Watch 4 Wegeners WE ARE UNIQUE ETHAN FOUNDATION We Care Journey We meet the rare diseases Werathah Jordan WiCell Wiedemann-Steiner Syndrome Foundation Wiki Club Ohrid Wikimedia Movement Wilhelm Foundation Williams syndromföreningen i Sverige WindReach Bermuda Winnipeg regional Health Authority Wisconsin Rare Disease Alliance Wolfram Syndrome UK WonderFIL smiles Words Worth Repeating Words Worth Repeating World Alliance of Pituitary Organisations *WAPO* World Bladder Cancer Patient Coalition World Bladder Cancer Patient Coalition World Orphan Drug Congress USA 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 Yasmin elsamra foundation Debra Egypt 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 Zebra_Bande Zenopa Recruitment Zentrum für Seltene Erkrankungen (ZSE) Ulm Zentrum für seltene Erkrankungen Jena ZMYND-11 Treatment Foundation Zonnebloem vzw ΚΔΑΠ ΑΜΕΑ ΒΟΛΟΥ ΙΡΙΣ Всероссийское общество орфанных заболеваний ГО ОРФАННІ-НПС (ORPHAN-NPC) Национална Алијанса за Невромускулни заболувања и Невронаука ГАНГЛИОН Скопје 向氧而生呼吸罕见病中心 酪宝宝的成长屋（酪氨酸血症）
