About the organisation

“Foreningen for Ataksi / HSP” is a non-profit and non-governmental organization which was created in 2004. In March 2016 we have 205 members of whom about 50% are affected with ataxia. The organization is run by a Board of Directors composed of 5 members and 2 substitute members who meet 4-5 times a year. Each year we have our GA and a “Theme Day” with invited speakers, e.g. neurologists and other specialists. We also organize social events, e.g. a family day at the Zoo, Walk’n Roll and events for the younger members. We create network groups and support our members in social and economic matters.

The Goals of Your Organisation

To work for our members by

  • Arranging events and find funding to them
  • Searching for knowledge about research in ataxia and HSP and publicise this knowledge
  • Creating networks
  • Drawing attention to our association and its work in the widest sense, e.g. informing about our activities and work on social media
  • Participating in European and International working relationships and find funding to these meetings
  • Working for creation of patient registries and participating in clinical trials
  • Making our association so interesting that we get more members

Achievements

We have an increasing number of members – an increase of 125 over the past 5 years, so we now have 205 members (HSP and Ataxia)

We now have 2 Zoo events – one in Copenhagen and one in Jutland

In 2015 we hosted Euro-HSP GA and Annual meeting

We are a member of Rare Diseases Denmark, Eurordis, Euro-HSP and Euro-Ataxia

 

Dorthe Lykke

Chairman

31.03.2016

Stakkesund 12 st. tv. 
2100 København Ø
Denmark

Telephone: (+45) 26275913

Website: http://www.sca-hsp.dk