MS-forbundet
lise.johnsen@ms.no
93013501
Lise Johnsen, leder (chair)
Patient & public involvement
User participation and user involvement in research and innovation processes is about letting those who know the needs be part of shaping the agenda. The user perspective can be useful both in strategic decisions when planning and establishing projects, as well as when planning the small but essential details that ensure projects are aligned to the requirements and challenges of the people that live with the diagnosis.
The user council works to:
- Be a link between the users and the Centre
- Contribute with knowledge and experience to the research
- Represents the users at various events
- Work for political attention for the work of the Centre and increase funding of research related to neurodegenerative diseases in general
- Contribute towards good principles for user involvement
Marit Stensen
ALS Norge
Lise Stousland Fesjå
Alltid Litt Sterkere
liszf@yahoo.no
93202582
MED.hjelper
The centre runs a project with VIS to establish a portal for patients and caretakers to find appropriate clinical trials.