Life sciences · Türkiye
Rare diseases and orphan medicines
Identify contacts for disease registries, natural-history research and orphan medicine development. Small study populations make the choice of endpoints particularly important.
Scientific background
In a registry project, agree which patients and outcomes a centre can document. A global prevalence estimate does not establish the number of eligible people at any Turkish centre.
An Orphanet analysis estimated that 3.5–5.9% of people worldwide were living with one of the rare conditions studied at a given time. It excluded rare cancers, infectious diseases and poisonings. The estimate cannot give a Turkish case count for a particular condition.
Türkiye published a national rare diseases strategy for 2023–2027. For a registry project, we can seek an introduction to a research group to discuss case definitions, age ranges and follow-up. European orphan designation alone does not establish marketing authorisation in Türkiye.
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Looking for a doctor with expertise in a rare disease, or a specialist organisation for a pharma or biotech project? We find out who can take your enquiry. Once you approve sharing your contact details, that person or organisation contacts you directly.
For an initial introduction, we only need your email address and the area of interest. Please do not send health information or medical reports here.
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General questions by email, please without health data: [email protected]