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SCIENTIFIC COMMITTEE (SC) OF AN ASSOCIATION/FEDERATION OF PATIENTS

This scientific committee aims to assess the quality of research projects in response to grant calls, ensuring the delivery of valuable scientific and medical information to patients. Current focus is on achieving the first goal, while the second goal is not prioritized by associations. The case study highlights the dependence of the committee on funding for its existence and the financial contributions made by national associations. It also discusses the preference for granting projects to national research teams and proposes greater involvement of patients in the research process.

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SCIENTIFIC COMMITTEE (SC) OF AN ASSOCIATION/FEDERATION OF PATIENTS

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  1. SCIENTIFIC COMMITTEE (SC) OF AN ASSOCIATION/FEDERATION OF PATIENTS GOALS To evaluatequality of researchprojects in response to a grant call (emitted by the association or by the SC itself) To warrant fair and valuablescientific & medical information intended for patients First goal ismainlyachieved by CS, so far. Second goal is not reallyasked by associations to referedspecialists. Paris 25/06/2016

  2. HSP CASE: SC EXISTENCE IS MONEY DEPENDENT! • Every SPATAX participant can clearly understand the strengh of the TWS foundation towards scientists & neurologists ! • How much does ours National associations raise in money for research/year? • Denmark : ? • France: 20-25 kE • Italy: 6 to 10kE • Netherlands: 0 • Norway: ? • Spain: ? • German Switzerland: ? Paris 25/06/2016

  3. SO FAR GRANTED PROJECTS GO TO NATIONAL RESEARCH TEAMS • Why? • For the Association • To keep National researchersworking on HSP • For the patients • To know where the money theygiveisgoing to , • To get back information on the use of collected money (annual GA) • To be more involved in research and to continue to give • To keep in hope. • For the research teams • In connectingwith patients to be more involved Paris 25/06/2016

  4. EURO- HSP SCIENTIFIC COMMITTEE DOES NOT OPERATE • Why? • OK in 2013, we nominated eminent scientists and neurologists from each of ours countriesbut there is no money to share! • We ,patients , we have’nt power to enforce scientists and teams to collaborate: it is their own problem! • 3) We have’nt yet proposed to the SC members to review and advise about common documents that we plan to place on our site. Paris 25/06/2016

  5. Jean’s PROPOSAL To berealistic in: Writting documents about all key information for HSP patients, step by step, and primarilyphysicalactivityconcerns for children Theninvolvingourreferedspecialists in askingthem to review, correct, and reapraise if necessary To place revised docs in our site, one after one. Paris 25/06/2016

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