Vitaliy Matyushenko

Vitaliy Matyushenko is the President of Ukrainian Charitable Foundation “Children with spinal muscular atrophy” since it was founded in 2004. He has a daughter who has been diagnosed with Spinal Muscular Atrophy type II. Vitaliy is a physicist but has almost 20 years in activities related to patient organisations both at the national and international levels. For the past years, he has organized different initiatives promoting the rare disease at national level such as legal initiatives, workshops on standards of care, the National conferences on SMA, national and international meetings, trainings. In 2008 he received membership the TREAT-NMD Global Database Oversight Committee and he plays most valuable role as curator of the Registry for SMA in Ukraine.