Turkey's Great National Assembly (Parliament); Establishment of the Parliamentary Research Commission in order to determine the treatment and care methods applied in ALS, SMA, DMD, MS diseases and other diseases whose definitive treatment is unknown, and the problems and solutions experienced by people with these diseases and their relatives. It was published in the newspaper with the decision numbered 1208.

The report prepared by the Parliamentary Research Commission, which consists of 12 members, as a result of a 4-month working process, was published in March 2020. During this period, the Board of Directors of the Association for Combating SMA Disease participated in the meetings held within the scope of advocacy activities and expressed the problems experienced by the patients.

Spinal Muscular Atrophy (SMA) disease part; under definition, clinical features, types of the disease, molecular genetics and pathogenesis, diagnosis and differential diagnosis, developments in treatment and drugs, symptomatic and supportive treatments, and prognosis.

The current situation and problems in the health services offered to the affected patients and their relatives; below;

  • Right to Health and Rare Diseases in Health Policies
  • National Registration System, Screening Programs
  • Diagnosis and Treatment (Current Diagnostic Tests, Drug Treatments, Medical Supplies, Home Health Services, Palliative Care, Treatment Abroad, Other Treatment Services)
  • Centers for Neuromuscular Diseases
  • Research and Development Studies in Rare Diseases
  • Knowledge and Awareness of Rare Diseases
  • Problems Experienced in Access to Health Services were discussed.

Current situation and problems in care and social support services, education and training services and services for working life offered to patients and their relatives; under; care and social support services, education and training services, working life of patients and their relatives were discussed.

&Cedil;ösolution suggestions in the title;

  • Recommendations for Health Services
  • Suggestions for Social Security Services
  • Recommendations for Care and Social Support Services
  • Recommendations for Education and Training Services
  • &Cedil;ÖSuggestions for Working Life
  • Recommendations for Raising Social Awareness
  • Non-Governmental Organizations
  • Priority recommendations on Rare Diseases were discussed.


Please click to download the Parliamentary Investigation Commission Report.