FOR MEDIA AND POLICY MAKERS

FOR THE MEDIA AGENCIES AND FREELANCERS:

RareBoost wants to play its part in informing the general public about all aspects of rare diseases, as well as the importance and benefits of the research on them. All RareBoost related information materials and press releases can be found here, sorted by following topics:

– Information about Rare Diseases

– Information about RareBoost

IBG wants to act as a source on up-to-date information on rare diseases for the media. Please get in touch with us for questions, discussions, recommendations, etc. For inquiries, please contact sevgi.bagislar@ibg.edu.tr .

FOR THE GOVERNMENTAL UNITS

All rare diseases combined not only cause an enormous amount of human suffering, but also are a major burden to the health system. This is, in particular, caused by the long delay, for most rare disease patients, in obtaining an accurate diagnosis.

RareBoost’s work likely will lead to new diagnostic and therapeutic approaches. To aid the efforts of us and our collaborators, IBG plans to work in partnership with governmental agencies to establish a regulatory framework for health (e.g. national patient registry) for rare diseases.

Furthermore, IBG wants to act as a source of up-to-date information and recommendations on rare diseases for the public sector. For inquiries, please contact sevgi.bagislar@ibg.edu.tr .