Charitable Foundation Children with Spinal Muscular Atrophy
Acronym: CSMA
General Information
Identification Code: 592117824784-97
Website: http://www.csma.org.ua
Entity Form: non-profit
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 11/29/2016
Last Update: 10/17/2023
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:
Indic Phone: 380
Phone Number: 503640673
EU Office
Address: Bohaterów Monte Cassino 164
Post Code: 40-231
City: Katowice
Country: POLAND
Phone:
Indic Phone: 48
Phone Number: 731324590
Financial Data
Closed Year:
Start Date:
End Date:
Funding Sources:
- Donations
- Member's contributions
Contributions:
- Amount: 0Currency: €_id:Buffer:0: 1041: 642: 613: 544: 1585: 2126: 182