European Reference Networks are based on the principle of patient empowerment and involvement to improve access, safety and quality of diagnosis, care and treatment for people with rare or complex diseases or those requiring highly specialized interventions. Patient representatives are experts by experience, and their involvement in ERNs is recognized as essential to represent patient needs and perspectives in network discussions and activities, and ultimately to help ERNs achieve their objectives.

In EURO-NMD, patient representatives are involved in all aspects of governance, research, education and care. In total, 34 patient representatives from 28 patient organisations and 15 countries are involved in the various EURO-NMD Working Groups.

Patient participation in EURO-NMD is organized on two levels:

  1. Participation in working groups (disease-specific groups, crosscutting specialist groups, and advisory boards)
  2. Membership in the Patient Advisory Board

The Patient Advisory Board, which coordinates patient participation in the network, is composed of 10 members from eight different countries, and chaired by François Lamy.

PAB members are part of the EURO-NMD governance and are full voting members of the Network Board. The PAB Chair and some of its members, as Chairs of other EURO-NMD Working Groups, are also full members of the EURO-NMD Executive Committee. This is currently the case for the Chair of the Educational Board, who is a patient. PAB members, like other patient representatives, can also be full members of the various EURO-NMD Working Groups.

The PAB also coordinates the participation of all 34 patient representatives in the various EURO-NMD Working Groups (Diseases Groups, Educational Board, Genetics Working Group, Multidisciplinary Management and Care Working Group, etc.…) and liaises with its member patient organisations.

Thus, the PAB ensures a high level of patient involvement in decision making and acts as a bridge between the ERN and the rare neuromuscular patient community.

Find out more about Patient Advisory Board members here.



Patient representation within the network is coordinated by a Patient Advisory Board (PAB), which is composed of nine members from five different countries, and chaired by François Lamy.

PAB members are also part of the Governance of EURO-NMD, and are full voting members of the Network Board, Executive Committee and working groups. In addition, the Chair of the PAB is a full member of the Executive Committee. PAB members also currently chair the Education Board and Ethics Committee and, as such, attend Executive Committee meetings.

The PAB thus creates a bridge between the ERN and the rare neuromuscular patient community. It aims to represent the voice of patients within EURO-NMD to ensure that the needs of people living with a rare neuromuscular disease are included in the strategic and operational delivery of the network. Ultimately, it strives to ensure that EURO-NMD services can answer to the needs and expectations of rare neuromuscular diseases patients and therefore improve access to high quality diagnosis, care and treatment.


To learn more about the Patient Advisory Board here.