In the field of neuromuscular diseases, highly active patient organizations have historically been a key in the generation of disease-specific training and information material for healthcare professionals as well as patients, and in the development of robust evidence to support health and social care interventions in their European Member State.
Reference Centers’ efforts being directed toward patients it is evident that the European Network of Reference Centers would not find its legitimacy without involving them. As a matter of fact they are involved to the greatest extent since they are present in all working groups where their input is most awaited.
Patient representation within the EURO-NMD is coordinated by a Patient Advisory Board comprised of 10 members from 8 different countries. It is currently chaired by François Lamy (AFM-Téléthon).
Intending to be a representative force within the European patient community they will contribute to collect data on patients’ experience, need, expectation … to support the constitution of common tools within the ERN. This will affect ERN work in all its aspects: medical, social, psychosocial, education, ethical, quality control.
In return patient representatives will play a key role to disseminate information through the continent and raise awareness about standards of care; risks associated with the procedures and treatments; adverse events and their causes; educational programs.