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 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
10
Özden Hatırnaz Ng
Ph.D. – Professor

Acıbadem University
08
Sibel Uğur İşeri
Ph.D. - Professor

İstanbul University
11
Yasemin Alanay
MD, Ph.D. – Professor

Acıbadem University
09
Müge Sayitoğlu
Ph.D. – Professor

İstanbul University
drilhansatman1
İlhan Satman
MD – Professor

İstanbul University
01r2
Uğur Özbek
MD, Ph.D. – Professor

Acıbadem University
07
Yücel Erbilgin
Ph.D. -Assoc. Prof

İstanbul University
05
Özlem Akgün Doğan
MD, Ph.D. -Assoc. Prof

Acıbadem University
06r
Çiğdem Erol
Ph.D. -Assoc. Prof

İstanbul University
10r3
Kaya Bilgüvar
MD.

Acıbadem University
03
Dr. Özkan Özdemir
Ph.D.

Acıbadem University

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