
Approximately 8,000 rare diseases have been identified in the literature, with 80% of these being genetically inherited. About 50% of patients are children. Sadly, 30% of children with rare diseases do not live to see their fifth birthday. The primary reason for this is that 95% of rare diseases currently have no available treatment.
While rare diseases affect 1 in every 16 people in Turkey, approximately 5 million individuals in Turkey and around 350 million worldwide live with a rare disease. Each disease has its own unique characteristics. Due to these specific traits, specialized care and treatment methods, medications, consumables, special nutrition, and medical devices are required.
Although the diseases are rare, their consequences are severe for the affected individuals, their families, and society as a whole.






