The Patient Advisory Board (PAB) aims to ensure true and equitable representation of the voice of patients within the EURO-NMD network so that EURO-NMD services can answer to the needs and expectations of rare neuromuscular disease patients and improve access to high quality diagnosis, care and treatment.
The PAB creates a bridge between the ERN and the rare neuromuscular patient community, by coordinating the participation of all patient representatives in the Network, and liaising with its affiliated patient organisations. The Patient Advisory Board also endorses additional patient representatives to join Specialist Groups based on their expertise. The PAB establishes its own Rules of Procedures and Terms of Reference. Membership: Members of the PAB include those elected via EURORDIS who constitute the European Patient Advocacy Group for EURO-NMD. Members from umbrella organisations (e.g. MDUK and VSN) have also been invited to join the Patients Advisory Board to ensure a proper representation of the neuromuscular patient community among the PAB.