Charitable Foundation Children with Spinal Muscular Atrophy
Acronym: CSMA
General Information
Identification Code: 592117824784-97
Website: [object Object]
Entity Form: non-profit
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 11/29/2016
Last Update: 10/17/2023
EP Accredited Number: 0
Mission & Interests
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.
Interests Represented: Does not represent commercial interests
Interests:
- Public health
- Research and innovation
Levels of Interest:
- european
- national
- sub-national
Activities
Main EU Legislative Proposals: National Rare Disease policy, Health Technology Assestment, National Registry for Rare Diseases and specific diseases
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: Gogolia street, 7
Post Code: 61057
City: Kharkiv
Country: UKRAINE
Phone: [object Object]
EU Office
Address: Bohaterów Monte Cassino 164
Post Code: 40-231
City: Katowice
Country: POLAND
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Membership Information
Members10 Percent: 0
Members25 Percent: 1
Members50 Percent: 1
Members75 Percent: 0
Members: 3
Members F T E: 1.75
Structure
Structure Type: Structure
Is Member Of: CSMA is a Member of:
- European Organization for Rare Diseases (EURORDIS);
- SMA Europe
- TREAT NMD
Organisation Members: https://www.sma-europe.eu/
https://treat-nmd.org/
https://www.eurordis.org/