Patient Support Groups  

There are several ways to search for a rare disease patient organisation.
Most will list patient groups by country:


USA:
1. NORD (National Organization for Rare Disorders) is the American national alliance
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2. ORD (Office of Rare Diseases), a service of the NIH (National Institutes of Health)
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3. GENETIC ALLIANCE
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Canada:
1. CORD (Canadian Organization for Rare Disorders) is the Canadian national alliance
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Europe:
1.Orphanet: the Orphanet website lists many patient organisations in different European countries and Morocco
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2. National Alliances in Europe:

Belgium:
Trefpunt
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Rare Disorders Belgium (RDB)
Belgian Alliance for Rare Disorders
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Denmark:
Rare Disorders Denmark
Sjældne Diagnoser
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France:
Alliance Maladies Rares
French Rare Diseases Alliance
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Germany:
Allianz Chronischer Seltener Erkrankungen (ACHSE)
German National Alliance for Chronic Rare Diseases
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Greece:
Greek Alliance for Rare Disease - (PESPA)
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Italy:
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
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Netherlands:
Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP)
Working Group on Rare Disorders
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Spain:
Federación Española de Enfermedades Raras (FEDER)
Spanish Rare Disease Federation
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Sweden:
Sällsynta diagnoser
The Swedish Association of Rare Disorders
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UK:
Genetic interest groups (GIG)
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Australasia:

Taiwan:
Taiwan Foundation for Rare Disorders
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New Zealand :
New Zealand Organisation for Rare Disorders
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