Patient centered and interoperable registry hub for Rare Neuromuscular Diseases
Friday June 26 – Today, over 20 project partners from 7 organizations participated in the joint kick-off of the EURO-NMD Registry Hub project. The goal is to build a registry hub for all neuromuscular …
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
Patient centered and interoperable registry hub for Rare Neuromuscular Diseases
2 Jul 2020Friday June 26 – Today, over 20 project partners from 7 organizations participated in the joint kick-off of the EURO-NMD Registry Hub project. The goa …
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Virtual coffee with patient organisations and Share4Rare
10 Jun 2020 -
AFM – COVID-19 Guidelines Available
21 May 2020
Upcoming events
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Painful neuropathies: from diagnosis to treatment
20 August 2020 -
World Duchenne Awareness Day
7 September 2020 -
The semantic variant of primary progressive aphasia: clinical manifestation and underlying neuropathology
8 September 2020 -
XIII. Czech and Slovak Neuromuscular Congress
10 September 2020 -
How to assess and manage spastic gait in rare diseases?
10 September 2020
- View complete list of events -
