Nöromüsküler Hastalıklar Eğitim ve Güçlendirme Akademisi

BACKGROUND

Progressive and almost incurable neuromuscular disorders can shorten the life expectancy of patients, reduce their mobility and prompt the need for care. Research indicates that the quality of life perceived by individuals with neuromuscular disorders depends highly on psychological and social factors rather than the severity of the disorder. Furthermore, difficulty in accessing information on disorders and disability can further inflict negative impact on the quality of life. This perspective necessitates informing and strengthening studies which consider the disorders and disability in the social and psychological aspects as much as the medical condition of the patient.

PROJECT GOALS

• Two distinct training modules will be prepared toward adults with neuromuscular disorders and towards the parents of children with neuromuscular disorders on physical health, psychological health and access to social rights.
• Approximately 17 training videos will be shot for the two training modules.
• The training content will be published on the “Neuromuscular Disorders Education and Empowerment Academy” website.
• A project outcome report will be prepared to describe the education model and shared with the relevant institutions to disseminate the model.

Testimonials