Who we are
EURO HSP is a Federation of national groups related with a Rare Disease called Hereditary Spastic Paraplegia or Strümpell-Lorrain disease. The federation was made up during the project Rare!Together from EURORDIS
The following countries and associations are member of EURO-HSP:
Foreningen for ATAKSI / HSP
EURO-HSP is an international apolitical, non confessional and non-profit association registered in Paris on July 2010 with the following objectives:
- Keeping up with and supporting medical research on HSP and related conditions;
- Central processing of information on such research and passing it on to the members of EURO-HSP
- Promoting and improving contacts between practitioners concerned and persons affected by HSP and other related conditions;
- Investigating social, political and cultural matters connected with the welfare of people affected by HSP and related conditions, as well as promoting and improving the exchange of information on such matters;
- Promoting co-operation on an international level between national associations for people affected by HSP and related conditions;
- Co-operating with or being members of other national and international organisations and institutions that have the objective of furthering the welfare of individuals affected by a physical disablement and, inter alia, those with a neuromuscular condition;
- Gathering funds and collecting, managing, using and distributing contributions, legacies and donations or their benefits, for the purpose of stimulating and promoting both medical research into HSP and related conditions and the welfare of people affected by them.
- Serving as a meeting point for any and all implicated groups (people with HSP, their families, investigators and scientists, doctors, nurses, health care workers, etc) where all aspects of dealing with optimal maintenance of health can be sought, including alternative methods with rational basis.
- Participating in media and media events in order to keep the general public as well as public and private institutions, European or International, aware of HSP issues and concerns.
- Other activities not specifically contemplated in these statutes that may favor the promotion, support, and social and labor inclusion of people affected by HSP and / or related conditions.
EURO HSP Statutes were presented at the Prefecture de Police de Paris and are registered under the reference W751205920. Creation was published at the Journal Officiel de la République Française of 31st July 2010 (number 31 of year 142) in page 3717 with number 1242.
The actual Board of Directors is formed by:
- President Marina Zapparoli (Italy), firstname.lastname@example.org
- Vice-president Hermien Remmelink (the Netherlands), email@example.com
- Treasurer Martin Ott (Switzerland), firstname.lastname@example.org
- Secretary ?
- Scientific Advisor Jean Benard (France), email@example.com