Contact

The Board

President

Sheila Hawkins

Co-Chair / Secretary

Sylvie Genet

Coordinator of Patient Interests

Bine Haase

Treasurer / Research Coordinator

María Vríens-Muñoz Bravo

Patient Representatives
(in outside organisations)

Stefania Bertucci

Guiseppe Ferrante

Ricardo Gerpe

Members

Annalisa Alimandi

Rachel Boutet

Paola de Donato

Maria Gómez-Rodulfo

Pierre Laurian

Marieke Verbij

Liz Williams

Scientific Advisors

Julie Dumonceaux

Medical Advisor
(Liason FSHD ETN)

Nicol Voermans

Project Advisors

Teresa Giuffrè

Alexandre Méjat

Languages

🇬🇧 We speak ENGLISH:

Sheila Hawkins
Liz Williams

🇪🇸 Hablamos ESPAÑOL:

Maria Gómez-Rodulfo
María Vríens-Muñoz Bravo

🇮🇹 Parliamo ITALIANO:

Annalisa Alimandi
Paola de Donato

🇫🇷 Nous parlons FRANÇAIS:

Rachel Boutet
Sylvie Genet
Pierre Laurian

🇩🇪 Wir sprechen DEUTSCH:

Bine Haase

🇳🇱 Wij spreken NEDERLANDS:

Marieke Verbij