Patient Advisory Board Booklet

The Patient Advisory Board (PAB) is responsible for identifying and making suggestions regarding patients concerns and expectations on the remit of EURO-NMD.

The PAB will establish their own rules of procedures and Terms of Reference.

Details about PAB and Patient Representatives are available in this booklet below.

Find out more in their 2024 booklet.

The Patient Advisory Board (PAB) is made up of eight European patient organisations, some of which have been elected through a process put in place by EURORDIS (ePAGs), while other umbrella patient organisations have been invited to join the ERN to ensure a proper representation of the neuromuscular patient community among the PAB.

The PAB coordinates the participation of all 38 patient representatives in the different EURO-NMD working groups (diseases groups, ethics committee, education board, etc…) and liaises with its affiliated patient organisations.

PAB members are also part of the Network Board, and two of them chair the Education Board and Ethics Committee, respectively. As such, they, together with the PAB Chair, are part of the Executive Committee of EURO-NMD.

This ensures the high-level involvement of patients in the decision-making, as experts in their diseases, and allows the PAB to create a bridge between the ERN and the rare neuromuscular patient community.

Details of our PAB members can be found below.

Further details about other EURO-NMD patient representatives can also be found in the Patient Representatives Booklet, which is available to download from this page.

You can also find the EURO-NMD patient representatives Constitution and Rules of Procedure.

Members of Patient Advisory Board