WE DID AN OFFICIAL VISIT AND HAD A MEETING WITH 11 MEPS FROM DIFFERENT PARTIES IN THE GRAND NATIONAL ASSEMBLY OF Türkiye.

As Turkey SMA Foundation; In order to convey the current problems of SMA patients that need urgent solutions regarding treatment and social rights, we made an official visit to 11 Members of Parliament from different parties in the Turkish Grand National Assembly and held a series of meetings. We accomplished it.

Our delegation, chaired by our Chairman of the Board of Directors, Ali Soyer, met on Tuesday, July 9, 2024. He met with Zeliha Aksaz Şahbaz, Suat Özçağdaş, Aylin Yaman, Gamze Taşçier, Selcan Taşçı Hamşıoğlu and Cemal Enginyurt at the Turkish Grand National Assembly. Patients experience difficulties such as free access to all treatment methods for all patients in SMA treatment, retirement rights of caring mothers, and TV regulation, and legal regulations are needed. We conveyed the topics heard.

Also “There is no disease, there is the patient” approach, an individual evaluation is made for each patient and the patient's needs are determined. We provided detailed information about the work carried out by our foundation in this field, advocating that people should receive the treatment they need. We would like to thank our esteemed MPs for their interest, to whom we conveyed the demands of SMA patients who are racing against time and whom we believe will follow up on the issue.