GA 2016

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Minutes for Euro-HSP GA and Annual Meeting


June 25, 2016 - 14:30 pm to 19:30 pm

Place: Alliance Maladies Rares, EURORDIS, rue Didot 96, 75014 Paris, Salle Pétunia.


Present: Marina, Tomas and Georgia (I), Hermien and Peter (NL), Martin and Karin (CH), Eduardo (E), Ingerid (N), Jean (F), Diana, Povl and Dorthe (DK).



1. Welcome and introductions
     As we had new participants, the meeting started after a short welcome and introductions of everyone.

2. Annual report from the president (Dorthe)

  • Activity report 2015-2016 Available here.
    Past activities: Everyone agreed with the report. Future activities: We agreed to add short personal reports from activities like RareDiseaseDays and other awareness events like Potato Pants events and Walk´n Roll. Dorthe will add RDD 2016 and PP in Italy 2016 in the activity report 2015-16.

  • Website Wanted: New webmaster
    The Umbraco manual and Dorthe´s personalized manual are both in English and ready for a new webmaster. No one wanted to take over, so Dorthe will continue for another year. All delegates were asked to look for a new webmaster to take over next year. We need to publish more info about national activities - and get more photos of active persons with HSP in order to make the website more interesting.

3. Annual report from the treasurer (Marina)

  • Report for 2015
    Everyone agreed. The report will be available online.

  • Budget for 2016
    Everyone agreed. We will try to cover the lunch and also dinner expenses by the Eurordis grant. The report will be available online

4. Election 1: Member to the Board of Directors

  • The vacant seat on the Board (The BoD recommends Martin)
    Unanimous agreement.

5. Election 2: Board of Directors

  • Vice-President (Marina accepts re-nomination for 2 years)
    Unanimous agreement.
  • Treasurer (For 1 year) (The BoD recommends Martin)
    Unanimous agreement.
  • Secretary (For 2 years) (The BoD recommends Hermien)
    Unanimous agreement.

The new BoD:
President:                                                  Dorthe Lykke
Vice-president:                                            Marina Zapparoli
Treasurer :                                                 Martin Ott
Secretary :                                                 Hermien Remmelink
Scientific advisor:                                        Jean Bénard
Member of the BoD:                                     Ingerid Ringheim


6. Report from our scientific board (Jean)

Status: the board has had no meetings, because of lack of money and projects. Jean gave a presentation on the goal for a scientific board and also a presentation on a survey on research money from the national associations. He also showed a list of research grants of ASL-HSP France 2009-17.

Plans: We need to make a list of prioritized research projects. We must define a project and then involve the scientific board for advice. A project could be our "HSP Best Practices". We also need to raise money for this project.

See Jean´s presentation here.


7. Reports from conferences

  • CEF meeting in Paris, France (Dorthe)
    Dorthe talked about the European Reference Networks, RareConnect, RARE-Bestpractices project by Eurordis and Eurordis membership criteria. Will be available online.
  • EURORDIS ECRD conference in Edinburgh, Scotland (Dorthe)
    Dorthe talked about some of the sessions: Progress with sequencing technologies, Rare Navigators and platforms for registries and research. Will be available online and comments here.

8. HSP Best Practices Manual

  • Points to be discussed and agreed on (Dorthe):
    Who is the manual meant for?

          This question started a very long and fruitful discussion, and we did not follow the suggested agenda points. At the end of           the discussion, we agreed on the following:

  •  The target group: patients, carers and professionals
  • The content: The manual should include information, recommendations and best practice. It should be written in general terms. Later it could be translated into national languages.
  • Goal: the draft manual should be finished by next GA 2017.

  • Outline: Hermien and Dorthe will make an outline based on Ataxia Best Practices. Hermien will send a draft to Dorthe before July 26. When the outline is agreed on by everyone, everyone will be asked to choose chapters to edit.
  • Coordinator: Dorthe

  • Working groups:
    Scientific matters: Jean and Hermien will work together.
    Children: Marina and Georgia will work together with Jean.


9. Strategic action plans for the future

  • GA and annual meeting 2017
    The meetings will take place in Sardinia on June 10-11, 2017. Marina will arrange social events the day before and the day after for the participants.
  • New members: enlargement of the Federation to all European countries
    Dorthe has worked out a list of SPATAX participants from countries, which are not represented in Euro-HSP. She will update our e-mail text and info-letter for potential members and contact the SPATAX participants.

  • Jean proposed a list of benefits for UK HSP to enter Euro-HSP. Dorthe will contact Adam Lawrence. Jean´s slide will be available online.

  • Funding: Pharma companies, Eurordis Grant, ?
    Pharma companies: we will adapt our current letter, when we have defined a project.
    Eurordis grant: we will apply again next year.
    Jean proposed to contact footwear companies for funding.

10. Other business
     HSP International logo: We will not register the logo until we need to.
     Patient registries: Hermien handed out a correspondence. Marina told about regional registries in Italy.




Minutes for Euro-HSP Annual Meeting

June 25, 2016 - right after the GA.


  • Reports from the national associations
    • Updating the info sheet
      The updated information is in red. Will be available online.
    • Updating the drug list
      Chantal Tallaksen, a member of our scientific board, has sent these comments: Sirdalud is prescribed more seldom in Norway now because it doesn´t have a better effect than other anti-spastic drugs. Dantrolene is seldom used now because of severe side effects. The list will be available online with the Spanish update.
    • Potato pants events
      Marina and Georgia told about the Italian Potato Pants event, which took place in Sardinia in May. They will write a short essay about it for our website.
  • Workshop: HSP Best Practices Manual (skipped)
  • Reimbursement forms (Dorthe)
    Dorthe handed out the reimbursement forms to the delegates and advised on the procedure.
  • Evaluation of GA and annual meeting
    Everyone agreed that the meetings had been very fruitful, as we finally made a big step forward with our action plan about HSP Best Practice.


Chair of the meetings: Diana Holm, DK

Dorthe / June 28, 2016