ADCA Vereniging Nederland

 

Address: Postbus 120, Hoek van Holland, the Netherlands

Phone number: 0031174383823

Email: info@ataxie.nlĀ 

Website: www.ataxie.nl

Ataxia in the Netherlands
In the Netherlands each year about thirty people receive the diagnosis of ADCA/SCA – the dominant form of ataxia. The prevalence of SCA in the Netherlands is low at around three per 100,000 inhabitants. On the basis of this estimation the amount of people with a dominant ataxia is thought to be around 500. ADCA Vereniging Nederland
The main goals of the ADCA Vereniging NL are to provide information, to raise awareness, to organise contact between patients and to promote research.

  • Information: Members will receive a magazine four times a year. The magazine provides information on the foundation, relevant meetings, personal experiences, medical issues and the latest regulations/legislation.
  • Website, Social Media (E.g. LinkedIn, Facebook)
  • Awareness: To raise awareness the ADCA Vereniging attends meetings and conventions.
  • Contact: Each year a national general meeting is organised and 4 regional meetings. Furthermore, a sponsored vacation week is also organised.
  • Research: Although the ADCA Vereniging has restricted financial resources, we try to encourage scientific research as much as we can within our means.