Charitable Foundation Children with Spinal Muscular Atrophy
Recent meetings
No recorded meetings with EU commissioners.
Mission & Goals
The Children with Spinal Muscular Atrophy (CSMA) is a voluntary, non-profit foundation in Ukraine whose mission is to provide support and information for anyone affected by or involved with Spinal Muscular Atrophy (SMA). SMA is a motor neuron disease characterized by the progressive degeneration of nerve cells in the spinal cord and brainstem, leading to muscle weakness, muscle atrophy, and respiratory complications. TOP 3 The primary goals of Foundation are: Protection of the rights of SMA patients and members of their families; Keeping and supporting National Registry of SMA patients; Assistance in building of experts' Involvement and support of both national and international collaboration.
EU Legislative Interests
National Rare Disease policy, Health Technology Assestment, National Registry for Rare Diseases and specific diseases
Interests Represented
Does not represent commercial interests
Member Of
CSMA is a Member of: - SMA Europe https://www.sma-europe.eu/ - TREAT NMD https://treat-nmd.org/ - European Organization for Rare Diseases (EURORDIS); https://www.eurordis.org/ - EURO NMD ERN https://ern-euro-nmd.eu/
Additional Information
Monthly donation by AVENTUS UKRAINE LIMITED LIABILITY COMPANY