Obstacles and expectations of rare disease patients and their families in Türkiye: ISTisNA project survey results

• Main Authors: Ozden Hatirnaz Ng (Author), Ilayda Sahin (Author), Yucel Erbilgin (Author), Ozkan Ozdemir (Author), Emrah Yucesan (Author), Nazli Erturk (Author), Merve Yemenici (Author), Ozlem Akgun Dogan (Author), Sibel Aylin Ugur Iseri (Author), Ilhan Satman (Author), Yasemin Alanay (Author), Ugur Ozbek (Author)
• Format: Book
• Published: Frontiers Media S.A., 2023-01-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Rare disease patients constitute a significant part of the healthcare system of all countries. However, the information on the experiences during disease processes and daily life of rare disease patients is still limited. So far, there is a small number of studies conducted in Türkiye, and they mai...