The position of neuromuscular patients in Shared-Decision-Making
ENMC highlights workshop report In 2018, ENMC held a special workshop on how to involve patients more in the decision making about research and care management of neuromuscular conditions. The ENMC Wh …
ERN background
Why rare diseases?
20 Feb 2019Between 5 000 and 8 000 rare diseases affect the daily lives of around 30 million people in the EU. For example, in the field of oncology alone, there …
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What are ERNs?
20 Feb 2019 -
Adding value for patients and professionals
20 Feb 2019 -
How ERNs are approved?
20 Feb 2019
Recent activities
AFM – COVID-19 Guidelines Available
21 May 2020AFM have developed a series of practical guidelines that wheelchair users, caregivers and the general wider NMD community might find useful. There are …
Upcoming events
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SMA Clinical Care Meeting ONLINE
10 June 2020 -
SMA Researcher Meeting ONLINE
10 June 2020 -
2020 Annual Cure SMA Conference CANCELLED
11 June 2020 -
Euromit 2020 POSTPONED!!
14 June 2020 -
Pediatric Muscle Imaging
25 June 2020
- View complete list of events -
