We stand by patients and their families struggling with rare diseases.
ISTisNa knows what it means to have a rare disease. Many obstacles are awaiting rare disease patients and their families, including an almost endless diagnostic odyssey, limited patient care, increased psychological distress due to social exclusion and lack of rare disease awareness . We are flapping our wings with hope, as we have many activities planned ahead in our journey.
İSTisNA Events
İSTisNA Platform has started its activities with its project partners, supporters and associates, aiming to accomplish a lot in a short time. Project activities can be summarized in four main categories. The Undiagnosed and Rare Diseases Advisory Board, which will be established within the scope of these activities, aims to achieve concrete results especially for the treatment of undiagnosed diseases.
Workshop and Trainings
- Capacity Building Trainings
- Capacity Building Trainings for Patients, Patient Relatives and Associations
- Trainings for Health Workers
Mainstreaming
- Corporate Communication Activities
- Awareness Activities
- Experience Center
- Lobbying Activities
- Health Economics Studies on Rare Diseases
Biobanks
- Biobanking of Rare Diseases
- Coordination between Biobanks
- Creating Biobank Networks
Translational Research
- Online Research for the Diagnosis and Treatment of Undiagnosed and Rare Diseases
- Collaboration in Rare Disease Research
- Project Development
İSTisNA Team
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AFFILIATES
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