INTRODUCTION to the patient participation programme
The patient voice is being heard at ENMC workshops!
ENMC encourages that persons directly involved with a neuromuscular condition participate in ENMC workshops. They are the ‘experts’ with a neuromuscular condition on a day-to-day basis and can share these experiences with researchers and clinicians also to prioritize the research agenda.
To explain their active role as a participant, ENMC has developed a Toolkit for patients and patient representatives with guidelines and information about the general course of a workshop.
Organisers of a workshop have an important role in managing succesful patient participation. This starts with proactively inviting a good spokesperson directly involved with a neuromuscular condition to the workshop meeting. In addition, the organiser as chair of the meeting should ensure that every participant of the workshop, including the patient representative, contributes to the discussions.
Download here the Toolkit for patients and patient representatives.
