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Workshop on Duchenne Muscular Dystrophy (DMD) Experiences and Recommendations from the Perspective of Patients and Families
The Türkiye Maternity, Child and Adolescent Health Institute held the online “Workshop on Duchenne Muscular Dystrophy (DMD) Experiences and Recommendations from the Perspective of Patients and Families” on September 17, 2025, to evaluate current challenges related to Duchenne muscular dystrophy (DMD) and develop proposed solutions.
Chaired by TAÇESE President Prof. Dr. Şirin Güven, the meeting brought together a total of 70 participants, including TAÇESE academics and researchers; Specialist Dr. Ayhan Öztürk from the Child, Adolescent and Reproductive Health Unit of the Directorate of Public Health Services at the Istanbul Provincial Directorate of Health; Dr. Yakup Süleymanoğlu and Specialist Dr. Gülcan Akyüz Yücel from Şehit Prof. Dr. İlhan Varank Training and Research Hospital; representatives of the Health Institutes of Türkiye and the Turkish Institute for Health Policies (TÜSPE); representatives of the Association for Combating Duchenne Muscular Disease, the Muscular Diseases Association of Türkiye, and the DMD Families Association; DMD activist Çağlar Özyiğit; and patients and family members invited by the associations.
The meeting addressed challenges experienced in the diagnosis, treatment, and care processes of DMD, as well as the needs and requests of patients.
Based on the experiences and recommendations of participants, short- and long-term solution strategies were discussed, and it was decided to take concrete steps to strengthen cooperation.
