Rare Diseases Network
We initiated collaborations with other rare disease associations in Turkey by attending the Rare Disease Network Meeting held at Acıbadem Hospital in 2020. Our board of directors contributed to awareness-raising efforts by taking an active role in the network meetings.
Legal Support
We provide legal support to families in lawsuits filed in Labor Courts seeking access to medications not covered by the Social Security Institution (SGK). Emphasizing the constitutional right to treatment, we are fighting for the reimbursement of these medications.
Turkish Database
We aim to create a database in Turkey by translating international publications and clinical reports on HPP and XLH into Turkish. This project will facilitate access for healthcare professionals and researchers.
