Annual General Assembly – 20.09.2021 (online)
September 27, 2021Here are the minutes from FSHD Europe’s last Annual General Assembly.
Annual General Assembly 2021/2022 (online)
20th September 2021
Reminder: our statutes
Members
| Organisation | Represented by |
| FSHD patient group Spierziekten Nederland | Diana van der Meij-Kim, Marieke Verbij |
| MDUK | Sheila Hawkins, Liz Williams |
| FSHD Spain | Maria Vriens-Munoz Bravo, Maria Gómez-Rodulfo |
| FSHD Italia | Annalisa Alimandi, Paola de Donato |
| FSHD diagnosis group DGM Germany | Bine Haase |
| Amis FSH France | Rachel Boutet |
| AFM-Téléthon France | Sylvie Genet |
Executive board
| Name | Elected in |
| Diana van der Meij-Kim | 2016 |
| Sheila Hawkins | 2018 – re-elected 2021 |
| Maria Vriens-Munoz Bravo | 2017 |
| Bine Haase | 2017 |
| Sylvie Genet | 2020 |
- President: Sheila Hawkins was re-elected as member of executive board and accepted the presidency
- Vice-President and Treasurer: Diana van der Meij-Kim
- Secretary: Sylvie Genet
- Research Coordinator: Maria Vriens-Munoz Bravo
- Coordinator of Patient Interests: Bine Haase
Advisors: Julie Dumonceaux and George Padberg (scientific advisors), Nicol Voermans (medical advisor), Alexandre Méjat (project advisor)
Patient representatives in outside organisations: Stefania Bertucci, Guiseppe Ferrante, Ricardo Gerpe
The names above for 2021/2022 have been accepted by unanimous vote.
Goals for 2021/2022
- Validate conformance of our statuses with the new law in The Netherlands
- Write Internal Rules
- Continue Patient Pharma Survey Project
- Continue to participate in FSHD European Trial Network; nominate patient representatives in working groups when needed
- Increase number of members (organisations)
- Participate in the World FSHD Alliance
- Organise our next General Assembly in May 2022 “in person”.