GA 2016

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Minutes for Euro-HSP GA and Annual Meeting

2016

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

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

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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).

 

Agenda:

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 www.eurohsp.eu 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.

Agenda:

  • 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

 

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