This project, conducted by our federation, aims to improve the quality of life for individuals with SSPE disease through a series of activities.
The study aims to develop new policy recommendations to address serious life limitations and violations of health rights arising from the course of the disease.
The project conducted a field survey nationwide in Turkey to identify the problems experienced by SSPE patients and conducted online surveys and in-depth interviews with at least 100 SSPE patients or their relatives. The data obtained were evaluated with stakeholders at a workshop held in Diyarbakır, and solution proposals were developed.
As a result of the study, a document containing the proposed policies to improve the quality of life for SSPE patients was prepared. This document was printed in ink and braille/embossed formats and distributed to relevant public institutions, health and educational organizations, civil society organizations, experts, and activists.
Additionally, the results of the project were disseminated digitally through posters and short interviews to be used in advocacy efforts and to raise awareness.
This project, conducted with the support of the EU Civil Society, has been the first project aimed at improving the quality of life for SSPE patients by providing solution-oriented policy recommendations to address the challenges they face.