Vitaliy Matyushenko

President of the Children with SMA Charitable Foundation

Ukraine

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 more than 15 years of public experience in activities related to patient organisations both at the national and international levels. Over the past years, he has organized different initiatives promoting rare diseases at a national level such as legal initiatives, workshops on standards of care, the national conferences on SMA, national and international meetings, and training opportunities. In 2008 he joined the TREAT-NMD Global Data systems Oversight Committee and he plays a valuable role as the curator of the Registry for SMA in Ukraine.