ACURARE — Rare Diseases and Orphan Drugs Application and Research Center

The Rare Diseases and Orphan Drugs Application and Research Center (ACURARE) was established in 2017 (Official Gazette 30119, 9 July 2017) to improve diagnostic and treatment opportunities in rare diseases and the orphan drugs used to treat them, to increase scientific and clinical research, to raise patients' quality of life and participation in decisions, and to develop and use existing resources more efficiently. Rare diseases affect fewer than 1 in 2,000 people; more than 7,000 are known, about 80% are genetic, and together they affect 6–8% of the population, at least 5 million people in Türkiye.

The centre brings all stakeholders under one roof: clinicians, diagnostic and treatment clinics, laboratories, hospitals, patient organisations, professional bodies, researchers and pharmaceutical companies working on orphan drugs. It builds academic knowledge, runs clinical and basic research, collects data for patients, clinical centres and health authorities, coordinates interdisciplinary services for patients and families and a multidisciplinary environment for researchers. Its research infrastructure includes the Rare Disease Biobank, omics technologies and bioinformatics; UDP-İST, Türkiye's first structured undiagnosed-disease programme, has reached a 38% diagnosis rate. ACURARE belongs to the Undiagnosed Diseases Network International (UDNI), ERDERA and Orphanet, runs the İSTisNA platform and genetic-counselling training, hosts ACURARE Talks and an internship programme, and represents Türkiye at meetings such as CEEBB, ICORD and the UDNI conference. Director Prof. Yasemin Alanay; founding director Prof. Uğur Özbek.

Management: Director Prof. Yasemin Alanay; founding director Prof. Uğur Özbek.

Application and research centres work with university researchers, students and external partners; write to the centre or send an enquiry below and GR3 will route it.