Draft agenda for Euro-HSP annual meeting and General Assembly


Place: Eurordis, Plateforme Maladies Rares, 96 Rue Didot, 75014 Paris. Room ?

June 10

Annual meeting

14:00 to 15:00 pm : Reports from the national associations

15:00 to 15:30 pm : Open discussion: our expectations to a conference

15:30 to 16:00 pm : Coffee break

16:00 to 18:00 pm : General Assembly

19:00 : Dinner

June 11

10:00 am to ? : General Assembly

? to 14:00 pm : Annual meeting

  • Points to learn from each other in the future
  • Evaluation of the meeting

14:00 pm : Lunch and goodbye





General Assembly Agenda:

1. Annual report from the president (Dorthe)
a. Activity report 2012-2013
b. Our new website www.eurohsp.eu
2. Annual report from the treasurer (Ingerid)
a. Report for 2012
b. Budget for 2013 (including our GA in Paris)
3. Working with our bank in Paris (Jean)
4. Election of the Board of Directors
a. The president (Dorthe accepts re-nomination)
b. The vice-president (Fina accepts re-nomination)
c. The treasurer (Ingerid) (She does not accept re-nomination but will accept nomination as secretary for a year)
d. The secretary (Marina) (She will accept nomination as treasurer for a year)
e. The medical advisor (Jean accepts re-nomination)
5. Report from our scientific board (Jean)
a. Status
b. Plans
6. Report from PAC (Patient Advisory Board) (Dorthe)
a. PAC
b. The IRDiRC conference in Dublin
7. Report from the EUPATI conference (Fina)
8. Ethical rules for working with pharmaceutical companies
9. Strategic action plans for the future
a. Conference and GA 2014
b. New members: enlargement of the Federation to all European countries
c. Funding: Pharma companies, DIA Philanthropy Program, Eurordis Grant
10. Other business

Chair of the meeting: Rob Camp