5 May 2022

In April 2022, 33 patient representatives from 23 patient organisations and 11 countries are involved in EURO-NMD.

What is the role of patient representatives?

Euro-NMD patient representatives represent the voice and interest of their patient community and act as the bridge between this community and Euro-NMD.

They take part in specialist disease groups, crosscutting specialist groups and advisory boards. They can also become members of the Patient Advisory Board, which coordinates patient involvement in the network.

See patient participation in Euro-NMD.

How to become a Euro-NMD patient representative?

Eligibility criteria include:

• Being experienced in living with a rare neuromuscular disease or have relevant expertise on rare neuromuscular diseases,
• Being officially endorsed by one or more patient organisation and/or a European Federation,
• Being able to speak fluent English.

Nominations are endorsed by the Patient Advisory Board, striving to ensure a balanced geographical representation and the widest representation possible of the neuromuscular patient community.

For this call, patient representatives from Northern, Central and Eastern Europe are strongly encouraged to apply.

If you are interested to learn more or apply, contact us at mraimbault@afm-telethon.fr

What can HCPs do?

Please share this call for recruitment with patient representatives from your country and invite them to contact us and join Euro-NMD.