Annual General Assembly – 20.09.2021 (online)

September 27, 2021 By Bine Haase

Here are the minutes from FSHD Europe’s last Annual General Assembly.

Annual General Assembly 2021/2022 (online)
20th September 2021

(Board) Members of FSHD Europe

Reminder: our statutes 


OrganisationRepresented by
FSHD patient group Spierziekten NederlandDiana van der Meij-Kim, Marieke Verbij
MDUKSheila Hawkins, Liz Williams
FSHD SpainMaria Vriens-Munoz Bravo, Maria Gómez-Rodulfo
FSHD ItaliaAnnalisa Alimandi, Paola de Donato
FSHD diagnosis group DGM GermanyBine Haase
Amis FSH FranceRachel Boutet
AFM-Téléthon FranceSylvie Genet

Executive board

NameElected in
Diana van der Meij-Kim2016
Sheila Hawkins2018 – re-elected 2021
Maria Vriens-Munoz Bravo2017
Bine Haase2017
Sylvie Genet2020          

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”.