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
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 -
How to assess and manage spastic gait in rare diseases?
10 September 2020 -
XIII. Czech and Slovak Neuromuscular Congress
10 September 2020
- View complete list of events -
