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
European
HSP Associations
EURO HSP Missions
- Empower its members
- Promote patient centric HSP research
- Take collective action for HSPers to access accurate diagnosis and optimal
treatment and care
Strategic Goals
- Support member organisations
- Influence the HSP Research agenda towards patient centric outcomes
- Secure the support of key researchers
- Achieve with Australian, US and TWS Foundations the unified worldwide voice for HSPers
Specific Goals
- Through a harmonious European HSP registry, encourage pharmaceutical industry investments
- Via EURORDIS, press UE making HSP a research priority
- Encourage SPATAX to commit patients when defining HSP Research priority
- Create a Patients - Researchers forum
- Develop a functional data base
- Coordinate with ERN-RND towards the best patients experience
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.