Patient Advisory Board : The Voice of Patients with Rare Neuromuscular Diseases

What is the Patient Advisory Board?

The EURO-NMD Patient Advisory Board (PAB) aims to ensure true and equitable representation of the patient voice in the European Reference Network.

It strives to create a bridge between EURO-NMD and the rare neuromuscular patient community so as to ensure that the needs of patients are included in the strategic and operational delivery of the ERN, and to ultimately improve access to high quality diagnosis, care and treatment.

To this end, patient representatives are also nominated for each of the EURO-NMD Specialist Groups and Advisory Boards.

What does the PAB do?

PAB
GOVERNANCE: Representation in all boards and groups
GUIDELINES: In line with patient needs
RESEARCH: Formulate priorities
EVALUATION: Feedback on quality indicators and recommendations
ETHICS: From data management to handling complaints
TRAINING AND DISSEMINATION: Develop educational materials and disseminate information
INFORMATION: Inform patients and professionals
TRANSPARENCY: Improve transparency of information

Who are the PAB members?

The EURO-NMD Patient Advisory Board comprises 10 members from 8 countries:
• Chair: François Lamy (AFM-Téléthon)
• Ria Broekgaarden (Dutch Patient Society of Neuromuscular Diseases)
• Nic Bungay (Muscular Dystrophy UK)
• Madelon Kroneman (Spierziekten Nederland, Neuromuscular Association Netherlands)
• Marisol Montolio (Duchenne Parent Project Spain)
• Jean-Philippe Plançon (French Association against Peripheral Neuropathies)
• Evy Reviers (ALS Liga Belgium)
• Piero Santantonio (MITOCON ONLUS)
• Inge Schwersenz (Deutsche Gesellschaft für Muskelkranke)
• Judit Varadine Csapo (Angyalszarnyak Hungarian Muscle Dystrophy Association)