Barcelona 2009

Rare together EURO-HSP

Jean's report as the EURO-HSP's Secretary
2009-06-19, Casa Convalescencia, Hospital St Pau, Barcelona

What have we learned? Where are we going?

MORNING (Rob Camp, coordinator)

  • Pros & Cons of Diseases Federations Ute Wallentin (Osteogenesis Imperfecta President, Germany).

  • Discussion in parallel Euro-HSP/ECHDO.

    In euro-HSP subcommittee meeting: Anja Helm, John Dart/Fernando (Spain), Jean Bénard (France), Dorthe (Denmark), Ingeride (Norway) and Anja Helm and John Dart as facilitators.



  • willingness to contribute of the 4 participants and possible involvement in the Bureau of Directors.
  • statutes almost prepared.

    A simplification of the final document is demanded in avoiding a too much formal style whose the deep sense is not immediate for average understanding.

    Mainly, "By Laws" must clearly be separated from "Statutes".

    Indeed Statutes will be laid on in french administration and cannot be changed unless heavy formalities. In contrast by laws are of internal EURO-HSP concern and may be changed by a simple vote of the General Assembly.

  • Report Back of the OCDHE (European Community of Heart Disease Organisation) and Euro-HSP sub-committees meetings.


EURO-HSP group defines the following Bureau:


Fernando GONZALES, HSP Spain

Pro: Strong willingness, 3 languages speaking (Spanish, French and English), retired man, HSP-free person and thus potential Euro-traveller.

Con: As a smoker must sometimes quit meeting to smoke outside!!!

Vice president:
Dorthe LYKKE, HSP-Ataxia Denmark

Ingeride RINGHEIM, NASPA-Norway

Jean BENARD + Jean-Louis NOGUEIRA (Vice and versa secretary!), ASLHSP France


  • Wiki/Internet: Denis Costello, Eurordis


  • Fundraising: C. Segovia

  • Advocacy workshop: John Dart, moderator


    Do patients have infuence? or The AIDS community experience
    - Robert Campbell, one Funder of Denver Principles (1983), 20 year AIDS willing activist.

    If I die of AIDS, forget burial. Just drop my body on the steps of the FDA
    - an in depth thought of this 25 year-lasting activism: Although victims we empower.

    PACs (Patients, Activists, Community) will change the paradigm, our situation is not desperate we are the own actors of our condition: we enable to change the situation.

    Rafy Babakhanian, Patient Activist NY
    - Consumer activism empowering the community.


    Guillermo Valverde, Actua funder of Actua (HIV + living people in BCN)
    - Lessons learned from Actua activism

    Barcelona6 Barcelona7

Cervezia, cathedral, middle age city...


Paella (black-inked and yellow-rice), grilled squids. Good-bye at the Hotel

Resolutions & First proposed milestones of the EURO-HSP group Project

  • Statutes and by laws reappraisal from Fernando to the group and back-up: July 30.

  • Last French translation of the Statues from Jean & Jean-Louis + seat adress: August 30 internal HSP France choice of the seat.

  • Jean-Louis & Jean precise money deposit required for statutes to be deposited.

  • Rob, Fernando, Jean-Louis and Jean research other European participating countries.

  • Statutes' Registration at a french prefecture corresponding to the EURO-HSP's seat address, October 30, 2009.

  • EURO-HSP involves 7 European countries, 1st Jan 2010.