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Workshop on Rare Pediatric Neuromuscular Diseases
The Türkiye Maternity, Child and Adolescent Health Institute (TAÇESE) held the online “Workshop on Rare Pediatric Neuromuscular Diseases” on October 20, 2025, from 2:00 p.m. to 5:00 p.m. to assess the current situation regarding Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA), rare neuromuscular diseases observed in childhood; address challenges encountered in service delivery; and develop proposed solutions.
The workshop was a continuation of the “Workshop on Duchenne Muscular Dystrophy (DMD) Experiences and Recommendations from the Perspective of Patients and Families,” held on September 17, 2025, and aimed to reflect the outcomes derived from patient and family experiences in efforts to improve healthcare services and advance research and project development processes.
The workshop was held with the participation of the Department of Autism, Intellectual Disabilities and Rare Diseases under the General Directorate of Health Services of the Ministry of Health; academics specializing in pediatric neurology and genetics from universities; and the TÜSEB–TAÇESE team.
The meeting addressed, from a multidimensional perspective, the challenges experienced by patients with DMD and SMA in diagnosis, treatment, rehabilitation, and social support processes. Participants identified the strengthening of multidisciplinary centers across the country, expansion of home care and rehabilitation services, simplification of medical report procedures, and provision of psychosocial support to patients and their families as priority areas of need.
Participants also recommended supporting domestic pharmaceutical and medical device development, expanding genetic screening programs, and ensuring the effective use of patient registry systems. They further emphasized the need to ensure equal opportunities in the right to education and social participation and to improve communication and coordination between healthcare professionals and patients’ families.
In line with these recommendations, it was decided to develop project and cooperation areas to be coordinated by TAÇESE in the identified priority fields.
