GA 2014

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Minutes for Euro-HSP GA and Annual Meeting



September 12, 2014 14:00 - 19:00


Place: Handicaporganisationernes Hus, Blekinge Boulevard 2, 2630 Tåstrup.

Room: "Ålborg"



14:00 - 15:00
Tour of "Handicaporganisationernes Hus"
- Amazing building and many photos on our Facebook page

15:00 - 19:00
General Assembly


We did a round of introductions; we welcomed our Danish guests as well as thanked them all for their hard work in preparing and bringing us all together.

Present: Charlotte (DK), Dorthe, Rob, Fina, Jean, Ingerid, Hermine (NL), Peter (NL), Marina, Pasquale (I), Rita (I), Tomas (I), Cornelia (CH), Martin (CH), Lilian (DK), Kåre (DK), Diana (DK) and Povl (DK).

  1. Annual report from the president (Dorthe)
    • Activity report 2013-2014 (attached)
      Everyone agreed with the report, nothing to add or debate

    • Website
      We agreed to use Facebook more.
      Many photos have been uploaded, especially from the walk the next day!

      We need to connect more to other groups, like SPATAX on Facebook also

  2. Annual report from the treasurer (Marina)
    • Report for 2013 (attached)
      Everyone agreed; no debate or disagreement. Everything will be available online.

    • Budget for 2014 (including our GA in Copenhagen) 
      No vote as we have not finished the year, but the budget as such was not contested.

  3. Election of the Board of Directors
    • The treasurer (Marina) (Marina accepts re-nomination for 2 years)
      Unanimous agreement

    • The secretary (Ingerid) (Ingerid accepts re-nomination for 2 years)
      Unanimously agreement

    • For 2015, the idea is to vote for President/Treasurer, then in 2016 the Vice-president/Secretary so we don't have overturn of everyone at the same time.

  4. Report from our scientific board (Jean)
    • Status
      Interesting presentation from Jean will be available online, talked about SPATAX, medical tx and a registry. Research article. Fay Y et al 2014 Neurology 2010 PS Home Study Science 2004

    • Plans
      Jean mentioned that he will be spending more time with Euro-HSP and will be working on a scientific action plan, including getting the scientific advisors more involved.

    • He talked about SPG4, the Australian proposal and a response, and a QOL paper.
      After a lively debate, we all agreed to work on a QOL document with input from everyone and a final version somehow available. Which could also be a tool for fundraising.

      Report from PAC (Patient Advisory Board) (Dorthe)

    • Dorthe also talked about registries as came up at the PAC, and how patients need to be more involved with IC forms.

    • Dorthe also asked for Euro-HSP to pay for her flight to Paris for the Eurordis CEF meeting and workshop on registries (Council of European Federations). 
      No one against. Passed unanimously.

      Report from the EUPATI conference (Rob)
    • Update on where the EUPATI project is and where it is going and the need for patients to be more involved.

      By-laws update (Dorthe)
    • Dorthe reminded us of two changes to the by-laws we had voted for last year and that she will update the official version online.
      No vote, just clarification. (attached)

      Strategic action plans for the future

    • GA and annual meeting 2015
      First option - Madrid. If not, Sardinia is option 2. Fina to work on it with her group.

    • New members: enlargement of the Federation to all European countries
      We were fortunate to welcome Switzerland and Netherlands to this year's GA and hope to continue to expand. Austria (Martin), Portugal (Fina), Baltics, Finland, Sweden (Dorthe).

    • Funding: Pharma companies, Eurordis Grant
      We need to work on an action plan in order to be able to fundraise. Project 1 - Best Practices/QOL, from a scientific agenda, including social activities. We also can try to do the walk on a national level and have an HSP/Ataxia Day where we all do a walk on national levels.

    • Best Practices (Fina)
      The best practices manual was unanimously agreed to quickly, and the QOL paper mentioned earlier can be the main focus of this.

    • Other business


Annual meeting

          Both will be available online.

  • Social benefits for people with HSP - reports from the national associations

          We ran out of time. Will be available online. Denmark Switzerland Italy

  • Prescriptions for HSP sufferers.  Druglist

  • Points to learn from each other in the future

          We ran out of time.

  • Evaluation of GA and annual meeting/No time.


October 4, 2014

Rob Camp, Chair of the meeting

Dorthe Lykke, President