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Eurordis - Rare Disease Europe
Find a patient organisation
A patient organisation is a not for profit organisation which is patient-focussed in its aims. It advocates on behalf of the patient in areas such as research, policy, diagnosis and treatments.
Search for a EURORDIS member patient organisation that represents your disease
EURORDIS has 995 member organisations from 72 countries.
Search Orphanet
Orphanet is a directory of rare diseases, orphan medicines, patient organisations, professionals, expert centres, diagnostic tests, research projects, clinical trials, registries and biobanks.
Find the European federation for your rare disease
A European Federation is a network of national patient organizations for a specific rare disease.
Choose your European federation Country
Choose your disease
22q11.2 deletion syndrome 22q11.2 duplication syndrome Alström syndrome Alternating hemiplegia of childhood Autosomal dominant complex spastic paraplegia Charcot-Marie-Tooth disease/Hereditary motor and sensory neuropathy Chilblain lupus Chronic inflammatory demyelinating polyneuropathy Chronic myeloid leukemia Classic Hodgkin lymphoma Congenital muscular dystrophy Cornelia de Lange syndrome Cystic fibrosis Diffuse lymphatic malformation Discoid lupus erythematosus Dravet syndrome Duchenne and Becker muscular dystrophy Facioscapulohumeral dystrophy Familial Chilblain lupus Familial cerebral cavernous malformation Friedreich ataxia Genetic nephrotic syndrome Genetic neuromuscular disease Genetic steroid-resistant nephrotic syndrome Gorham-Stout disease Guillain-Barré syndrome Hemophilia Hereditary hemorrhagic telangiectasia Hereditary spastic paraplegia Homozygous familial hypercholesterolemia Huntington disease Hypertrophic or verrucous lupus erythematosus Ichthyosis Idiopathic pulmonary fibrosis Idiopathic/heritable pulmonary arterial hypertension Jacobsen syndrome Kaposiform lymphangiomatosis Large congenital melanocytic nevus Lesch-Nyhan syndrome Lupus erythematosus panniculitis Lupus erythematosus tumidus Malformation syndrome with hamartosis Marfan syndrome Mucopolysaccharidosis Multiple endocrine neoplasia Multiple endocrine neoplasia type 1 Multiple endocrine neoplasia type 2 Multiple endocrine neoplasia type 4 Multiple myeloma Myasthenia gravis Myotonic dystrophy Neuromuscular disease Non-Hodgkin lymphoma Non-syndromic limb reduction defect Osteogenesis imperfecta Pediatric cancer Pediatric systemic lupus erythematosus Phenylketonuria Poliomyelitis Postpoliomyelitis syndrome Proximal spinal muscular atrophy Proximal spinal muscular atrophy type 1 Pulmonary arterial hypertension Rare ataxia Rare cardiac disease Rare chromosomal anomaly Rare cutaneous lupus erythematosus Rare genetic disease Rare hepatic disease Rare hereditary hemochromatosis Rare lymphatic system anomaly Rare renal disease Rett syndrome SATB2-associated syndrome Sarcoidosis Scleroderma Sickle cell anemia Sickle cell disease and related diseases Sjögren syndrome Subacute cutaneous lupus erythematosus Symptomatic form of hemochromatosis type 1 Syndromic aniridia Systemic lupus erythematosus Thalidomide embryopathy Thyroid carcinoma Thyroid tumor Tuberous sclerosis complex Tumor of hematopoietic and lymphoid tissues Von Hippel-Lindau disease Williams syndrome
Find the rare disease national alliance in your country
National alliances federate patient organisations from a wide range of diseases within a particular country.
Choose your disease national alliance country
Albania Argentina Australia Austria Belgium Bosnia and Herzegovina Brazil Bulgaria Canada China Croatia Cyprus Czech Republic Denmark Finland France Georgia Germany Greece Hungary Iceland India Iran (Islamic Republic of) Ireland Italy Japan Kazakhstan Kosovo Latvia Lithuania Luxembourg Malaysia Malta Montenegro Netherlands New Zealand North Macedonia Norway Poland Portugal Romania Russian Federation Serbia Slovakia South Africa Spain Sweden Switzerland Taiwan, Province of China Ukraine United Kingdom of Great Britain and Northern Ireland United States of America
Search for a RDI member
RDI members consist of national alliances, international federations and pan-regional networks
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