Rare Disease Research Needs Assessment Survey and Workshop Report has been published

We have published a report based on the ‘Status and Needs Assessment for Rare and Undiagnosed Diseases with Research Area Stakeholders Survey and Workshop’ which was conducted last year.

The survey was completed by 363 researchers and healthcare professionals, detailing the challenges that they face in diagnosing, treating, managing and conducting research on Rare Diseases in Türkiye. The following workshop was attended by 68 experts, including professionals from healthcare, academic, industry and governmental institutions, as well as NGOs, who provided valuable suggestions based on the issues raised in the survey.

The report summarizes the results of the survey and the focused workshop, examining the challenges and detailing actionable suggestions to improve the diagnosis, treatment, care and research on Rare Diseases in Türkiye.

The report can be downloaded from the homepage of the RareBoost’s website.

In English: https://rareboost.ibg.edu.tr/#report

In Turkish: https://rareboost.ibg.edu.tr/tr/home-turkce/#rapor