3 March 2022

We wish a warm welcome to the four new patient representatives of Euro-NMD:

  • Yasemin Erbas (SMA Europe);
  • Maria Borrell (ASEM, Spain);
  • Carolina Navalon-Martinez (Spanish Patients´ Association affected by Arthrogryposis Multiplex Congenita);
  • Boryana Stoyanova (National Association of Patients with Mitochondrial Diseases, Bulgaria).

In total, 33 patient representatives from 23 patient organisations and 11 countries form part of our network. All are interested to take part in the activities of one or more Euro-NMD working groups. An overview of patient participation in the different working groups is available here.

Among them, the Patient Advisory Board (PAB) is comprised of nine members, and chaired by François Lamy (AFM-Téléthon). The PAB aims to ensure true and equitable representation of the voice of patients within Euro-NMD, including by coordinating the participation of all 33 patient representatives in the network, and creating a bridge between the ERN and the rare neuromuscular patient community.

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern