Virtual coffee with patient organisations and Share4Rare
Research is at the heart of solutions for all patients. However, it is not always conducted with the patient in mind. Patient organisations are increasingly invited to submit evidence to healthcare de …
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
Virtual coffee with patient organisations and Share4Rare
10 Jun 2020Research is at the heart of solutions for all patients. However, it is not always conducted with the patient in mind. Patient organisations are increa …
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AFM – COVID-19 Guidelines Available
21 May 2020 -
The position of neuromuscular patients in Shared-Decision-Making
21 May 2020
Upcoming events
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Translational Summer School 2020 POSTPONED!
6 July 2020 -
ICNMD 2020 POSTPONED
10 July 2020 -
EURO-NMD Board Meeting 2020 ONLINE!
11 July 2020 -
Introduction to MR Neurography
23 July 2020 -
PPMD 2020 Annual Conference ONLINE
23 July 2020
- View complete list of events -
