HSP Bordeaux minutes

16th & 17th April

Rob (EURORDIS), Fernando (Spain), Dorthe (Denmark) and Jean Louis (France)


  1. Where we are (contacts with other organizations, problems...)
  2. The wiki site
  3. Better base country
  4. Statutes and bylaws
  5. Objectives of the federation
    - Membership
    - Fees
    - Financing

AD 1) Where we are

How many countries do we have?
- 5 right now, committed. To review the five and others:

Spain -yes
France - yes
Denmark - yes
Norway - yes
UK - we need to re-connect with Ian

- citing time and money, have decided not to continue with us for now.

- Jean Pierre has contact (see below)

- there is a doctor interested in starting a group

- Jean-Louis will continue talking with them (they have language issues as well as being super-new)

- Dorthe will follow up

- Benard will follow up

- Rob has found a website with no English information. Will continue to investigate.

- beginning of contacts through Spain

- no one

- ataxia group

- same?

Fernando pointed out that we have a limited number of countries/persons and we need to continue the search. In the meantime, we will need money for travel that we really do not have, beyond the rare!together project..

Fernando will continue working with the Spanish National Focal Point for any more EU information on groups from other EC countries. Rob gave Dorthe and Jean-Louis the NFPs for Denmark and France, who should be considered a reference for all things EU.

Since the meeting, we have had information on a SPATAX meeting in Paris, where a number of new countries' investigators will be present, for example, Portugal, Italy, Israel, Serbia, the Netherlands, UK and North Africa. Dorthe and Rob will try to attend to do networking + learning. Jean Benard may be able to help.

We had conversation on getting involved with other neuromuscular disorder groups to amplify our base. While no decision was taken, it was felt that to be inclusive would be better than exclusive, and from the slides attached, "any hereditary neuropathological degenerative condition" should be included in the eventual statutes.

AD 2) The wiki

 - while Fernando is using it greatly, others have not started. We need to make an announcement that others can join in on the construction. Dorthe showed interest in doing so.

AD 3) Base country

 - while everyone agreed that France is the logical choice, Jean-Pierre of France suggested that Belgium could be an alternate choice. He will take it up to investigate and report back. In the meantime, we will continue moving with France as our top choice, unless otherwise convinced of Begium by the Belgians.

Fernando went through slides on the pro's and con's of a European Federation, a mix of what Karleen and Ute had presented in Paris in February.

Download PowerPoint intro presentation from Bordeaux.
Download PowerPoint presentation from the EFHSP meeting in Bordeaux.

Where to register? What to consider?

  • Difficulties and possibilities to follow-up administration
  • Cost
  • Tax on income
  • Tax reduction for donations

Look for strong local association(s) who can back and support the European Federation.

  • For registration and follow-up bylaws
  • Help with administration and facilities
  • If strong/leading people leave the federation, the work can still go on
  • Give yourself time, slow down if necessary. Think things through, get to know each other & define clear goals

This is best done before investing time in setting the legal structure and looking for money

  • Decide what you want to achieve with your group, set clear goals, define an action plan and strategy

  • Make it easy to join your federation (you could make a difference between inviting organizations to receive info and take part in activities and being a paying member) - be inclusive rather then exclusive (you want to represent and involve as many patients and families as possible)

  • Have something essential to offer to national patient groups and medical and scientific organizations - and communicate that clearly re: what you can offer and how

  • Be present on all European platforms related to your disease (e.g., conferences, websites.)

  • Use existing platforms to bring people together, e.g., scientific/medical conferences, rare disease (Eurordis) meetings - that way, it is easier to get people together (some may want to participate in the other meeting anyway), it is also cheaper, and gives better visibility

  • Work together with health care professionals - Many goals are common goals and they know who is or could be active in the field

Rob then went through some points, many of which had already come up through the course of the meeting. One thing he underlined was the abililty of a pan-European group to help newer groups locally (for example, after the Bordeaux meeting, Fernando and Rob spoke with Cyprus regarding how to set up a group).

AD 4) Statutes and bylaws

EFHSP may better be called Euro-HSP like Euroataxia. Agreed on.

Statutes - Fees for each type of member (full vs associate, etc) sliding scale like EURORDIS.

AD 5) Objective of the federation

Professionalisation is very important and probably key to the long term health of a Federation.

Multiple Myeloma as an example points to a uniting theme that causes groups to unite quicker and more forcefully.

Community involvement in research. Probably investigators need to be on Board. As well as separate Scientific Board.

Termination - depends on level of harm? And later, re-institution?

Must at least one person with HSP be on the BOD? Agreed, at least one. Rob suggested at least 50%. No agreement.

Chair decided by BOD. Members choose BOD, BOD decides each position (Chair, VC, Tresurer, Secretary).

Internal auditors - a good idea.

Accounts should always be made available to members, at the very least once per year, but during the year, as IA see fit.

Quorum is 50% +1 or 2/3?

Can members be paid for work? Minutes have to be in French (for legal) and English (for members).

Co-opting can happen as needed.

We talked about having a multi-year action plan (strategic plan) that would not only set the course but help us stay the course in the face of any setbacks.

For the moment, any translations that need to happen will occur via the members.

Rob will update the statutes according to these minutes and they should be put on the website soon. Rob's slides attached also.