INTRODUCTION to the patient participation programme
The patient voice is being heard at ENMC workshops!
The mission of ENMC is to encourage and facilitate communication and collaboration in the field of neuromuscular research with the aim of improving diagnosis and prognosis, finding effective treatments and optimizing standards of care to improve the quality of life for people affected by neuromuscular diseases.
To achieve this mission, it is essential that people directly affected by neuromuscular conditions participate in ENMC workshops. As ‘experts’ through lived experience, they can share valuable day-to-day insights with researchers and clinicians and help shape and prioritize the research agenda.
To support their active role in workshops, ENMC has developed a Toolkit for patients and patient representatives, which provides patients with guidelines and practical information about the general structure and course of a workshop.
Download here the Toolkit for patients and patient representatives.
