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PATIENT ORGANISATIONS

Umbrella organisations

European Organization for Rare Disorders (EURORDIS) 

National Organization for Rare Disorders (NORD) 

A Nordic link collection and contact arrangement for rare diseases

Country Organisations

Canada

Canadian Organization for Rare Disorders

Denmark

Om Center for Små Handicapgrupper (CSH)

Sjældne Diagnoser

Finland

Organization for rare diseases

Germany

Datenbank für seltene Krankheiten

Allianz Chronischer Seltener Erkrankungen

Netherlands

VKS

Spain

Spanish Federation for Rare Diseases (FEDER)

Spanish Society of Neonatologists

Asociación Española de Diagnóstico prenatal - Spanish Association for prenatal diagnoses
Sociedad Española de Neuropediatría - Spanish Society of Neuropediatrics

Sweden

Sällsynta diagnoser - ett riksförbund för små och mindre kända handikappgrupper 

National Board of Health and Welfare (Sweden)

SmågruppsCentrum

Specific organisations

Children's Liver Disease Foundation 

Children Living with Inherited Metabolic Diseases (CLIMB) 

Hereditary Tyrosinemia Group (Groupe Aide Aux Enfants Tyrosinemiques Du Quebec) 

The Hypoparathyroidism Association

International Patient Organization for Primary Immunodeficiencies 

Parathyroid Disorders and Treatments 

Alkaptonuria Patients Society 

The Urea Disorders Consortium

Urea Cycle Disorders (UCDs) - UCYCLYD

National Urea Cycle Disorders Foundation 

The National Information Centre for Metabolic Diseases

British Inherited Metabolic Disease Group

SFEIM - Société Française pour les erreurs innées du métabolisme

Regionalgruppe Harnstoffzyklusdefekte für betroffene Familien

Arbeitsgemeinschaft für Pädiatrische Stoffwechselstörungen

S.E. de Errores Innatos del Metabolismo

Asociación Española para el Estudio de los Errores Congénitos del Metabolismo

Red de Enfermedades Metabólicas Hereditarias

UK Thalasseamia Society

Other

Patient Organization on Retinitis Pigmentosa (Sv. RP-föreningen)