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 ten European patient organisations, some of which have been elected through a process set up by EURORDIS (ePAGs), while other umbrella patient organisations have been invited to join the ERN to ensure adequate representation of the neuromuscular patient community within the PAB.

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.

Details of our PAB members can be found below.

More details about other EURO-NMD patient representatives can also be found in the Patient Representative Booklet, which can be downloaded from this page.

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

Members of Patient Advisory Board