Important Links
National Rare Disease Resources
- Republic of Türkiye Ministry of Health
- Izmir Biomedicine and Genome Center – Rare and Undiagnosed Diseases Platform
- Izmir Biomedicine and Genome Center – Biobank
- Phenylketonuria (PKU) Family Association
- Mucopolysaccharidosis and Similar Lysosomal Storage Diseases (MPS-LH) Association
- Turkish SMA Foundation
- SMA Walk With Me Association
- KIFDER
- Behçet’s and Familial Mediterranean Fever Patients Association (Befemder)
- Paroxysmal Nocturnal Hemoglobinuria (PNH_aHUS) and Other Complement Diseases Association
- Albinism Association
- Pulmonary Hypertension and Scleroderma Patient Society (PAHSSC)
- Hereditary Angioedema Patient Solidarity and Assistance Association
- Rare Autoimmune Rheumatic Diseases Solidarity Association
- Inflammatory Bowel Diseases Solidarity and Assistance Association
- Association for the Fight against Duchenne Muscle Disease
- Down Syndrome Association
- Cri du Chat Syndrome Association
- ALS – MNH Association
- Turkish Disabled People’s Association
- Spina Bifida Association of Turkey
- Tay-Sachs and Sandhooff Charity
- Disabled Children’s Rights Network
- Rare Diseases Network
- KASDER – Turkish Muscular Diseases Association