About Türkiye SMA Foundation
The foundations of the Türkiye SMA Foundation were laid with the Association for the Fight Against SMA Disease, established by a volunteer team that came together to increase awareness of SMA (Spinal Muscular Atrophy) in society, to carry out advocacy activities to contribute to the legal regulation processes in treatment, and to support patients and their relatives’ free access to treatment, education and social rights.
Our association, which was founded in 2017 with the need for a civil society movement in the process of approving the first drug that could reduce the devastating effects of the clinically severe and incurable SMA disease in our country, has undertaken many works with the principle of ‘Fair and accessible treatment for every patient’.
Since our foundation as an association, we have created an effective solidarity network in the organization of the disabled in order to ensure that SMA patients benefit from their rights in health, education and social areas to the maximum extent.
As a rights-based and non-profit civil society organization, our focus has been to produce solutions in every field covering the needs of patients and their families, from awareness and advocacy activities to treatment and medical device support, from educational scholarships to basic needs.
As the Association for the Fight Against SMA Disease, we set out on this path today; we are a big family with our employees, supporters and volunteers. In order to provide stronger support for the active participation of more SMA patients in life, we continue on our path as the TÜRKİYE SMA FOUNDATION, which we established on 26.07.2022.
TÜRKİYE SMA FOUNDATION is also a member of national and international civil society platforms including Treat NMD, Eurordis, Turkish Philanthropy Funds (TPF), SMA Europe, European Alliance of Neuromuscular Disorders Associations (EMADA), Adım Adım, Açık Açık, Rare Diseases Network.