GA 2016
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