Patient Advisory Board – PAB – European Reference Network

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.

Find out about the PAB in the latest version of their booklet (July 2019)

Patient Advisory Board - Booklet — 2019 Version of PAB booklet

Publications

Survey on patients’ organisations’ knowledge and position paper on screening for inherited neuromuscular diseases in Europe

229th ENMC international workshop: Limb girdle muscular dystrophies – Nomenclature and reformed classification Naarden, the Netherlands, 17–19 March 2017

The Patient Advisory Board (PAB) comprises of the European Patient Advocacy Group (ePAG) which is made up of 7 patient organisations elected through a process put in place by EURORDIS for patient organisations in general, as well as invited umbrella patient organisations which will encourage and empower patients to participate in our activities, strategy development and research.

The network is fully committed to delivering a patient-centric approach ensuring patients are represented at every stage of developement. Patients will also be empowered though formal roles in the project via the Patient Advisory Board and representation on the other key boards and specialist groups. This will ensure the high level involvement of patients in the decision making, as experts in their diseases, which will manifest through contribution to early project work on guidelines, outcome measures and advances in diagnostics, which are important to rare disease patients.

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