Links
- Canadian Directory of Genetic Support Groups: A comprehensive directory of resources for support groups and disorders.
- Genetic and Rare Diseases Information Center (GARD): lnformation about genetic conditions and rare diseases.
- Orphanet: Provides information on rare diseases and orphan drugs.
- NORD Rare Disease Support Community: Connects patients, families, friends and caregivers for support and inspiration.
- Rare Disease Foundation: RDF's goal is to change the lives of children and families affected by rare and undiagnosed diseases through social support, advocacy and treatment-focused research.
- RareShare: A unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.
International Rare Disorder Organizations
- Belgium: Rare Disorders Belgium (RDB)
- Denmark: Rare Disorders Denmark
- European Organization for Rare Diseases (EURORDIS)
- France: Alliance Maladies Rares
- Germany: Allianz Chronischer Seltener Erkrankungen (ACSE)
- Greece: Greek Alliance for Rare Disease (PESPA)
- Italy: Federazione Italiana Malattie Rare (UNIAMO)
- Netherlands: Alliantie voor Erfelijkheidsvraagstukken (VSOP)
- New Zealand: Organisation for Rare Disorders (NZORD)
- Spain: Federacin Espaola de Enfermedades Raras (FEDER)
- Sweden: Rare Diseases Sweden
- Taiwan: Foundation for Rare Disorders
- United States: National Organization for Rare Disorders (NORD)
Link Submission
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