- UDNI (Undiagnosed Diseases Network International)
- İSTisNA Platformu
- ERDERA (European Rare Disease Research Alliance)
- EURORDIS (Rare Diseases Europe) https://www.eurordis.org/
- ORPHANET
- GARD (Genetic and Rare Diseases Information Center)
- NORD (National Organization for Rare Disorders)
Rare Disease Day (Nadir Hastalıklar Günü)
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