ERN-EURO-NMD – European Reference Network

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Patient focussed summer newsletter now available

We are delighted that our patient focussed summer newsletter is now available to read. In this special newsletter you will find out about the Network’s Patient Advisory Board, and their all-pervasive …

ERN background

Why rare diseases?

20 Feb 2019

Between 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 …

Recent activities

Registries Position Paper Issued by Patient Advisory Board

30 Jul 2019

EURO-NMD Patient Advisory Board (PAB) has published a position paper which describes patients’ views on the design of the EURO-NMD registry, its gover …

Patient focussed summer newsletter now available
24 Jul 2019

EAN and EURO-NMD establishes memorandum of understanding
29 May 2019

Upcoming events

View complete list of events..

Our platforms

The ERNs are co-funded by the
European Union (Health Programme and CEF)

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern“

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ERN background

Why rare diseases?

What are ERNs?

Adding value for patients and professionals

How ERNs are approved?

Recent activities

Registries Position Paper Issued by Patient Advisory Board

Patient focussed summer newsletter now available

EAN and EURO-NMD establishes memorandum of understanding

Upcoming events

National Limb Girdle Muscular Dystrophy Conference 2019

Clinical trial readiness in nemaline myopathy

World Duchenne Awareness Day

MDF Annual Conference 2019

Rare disease perspectives in Central – Eastern Europe

Our platforms

Clinical Patient Management System (CPMS)

Collaborative Platform

CPMS Helpdesk