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 (specialist disease 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.