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.

In order to explain their active role as a participant, ENMC has developed a Patient Participation Toolkit for Patients 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 a chair of the meeting should secure that every participant of the workshop, including the patient representative, contributes to the discussions. Therefore, a Patient Participation Toolkit for Organisers has also been developed.