Contact

The Executive Board

President

Sheila Hawkins

Co-Chair / Secretary

Sylvie Genet

Coordinator of Patient Interests

Bine Haase

Treasurer

Kees van der Graaf

Other Board Members

Hicham Alaoui Fdili

Paola de Donato

Maria Gómez-Rodulfo

María Vríens-Muñoz Bravo

Members

Annalisa Alimandi

Kisten Nielsen

Hanne Skovgaard

Patient Representatives
(in outside organisations)

Stefania Bertucci

Guiseppe Ferrante

Ricardo Gerpe

Scientific Advisors

Julie Dumonceaux

Medical Advisor
(Liason FSHD ETN)

Nicol Voermans

Project Advisors

Alexandre Méjat

Project Manager

Ria de Haas

Languages

🇬🇧 We speak ENGLISH:

Sheila Hawkins

🇪🇸 Hablamos ESPAÑOL:

Maria Gómez-Rodulfo
María Vríens-Muñoz Bravo

🇮🇹 Parliamo ITALIANO:

Annalisa Alimandi
Paola de Donato

🇫🇷 Nous parlons FRANÇAIS:

Hicham Alaoui Fdili
Sylvie Genet

🇩🇪 Wir sprechen DEUTSCH:

Bine Haase

🇳🇱 Wij spreken NEDERLANDS:

Kees van der Graaf
Ria de Haas