Neuromuscular Summer School 2018 – Report
The first Neuromuscular Translational Summer School was devised and developed by Professor Annemieke Aartsma-Rus (LUMC, Netherlands and Newcastle University, UK), Silvere van der Maarel, (LUMC, Nether …
Kate Bushby announces her retirement
After 29 years at Newcastle University, Professor Katie Bushby MD FRCP has announced her retirement as Professor of Neuromuscular Genetics and as coordinator of our ERN from the end of May 2018. Whils …
Share4Rare hosts co-creation workshop
Share4Rare hosted a co-creation workshop on Friday 18th May at MDA Hallas in Athens, Greece. Content for the S4R platform was reviewed by patients and patient advocates for content and readability. Ba …
Summer School Programme now available
A more detailed version of our translational summer school programme is now available on our website. We are still accepting applications for our summer school, which is run in association with TREAT- …
Press release following the rare diseases day and 1 year anniversary of ERNs
The computer networks are up and running and rare disease patients are starting to enter their data. A year after their launch, the European Reference Networks are looking ahead to what it will take t …
Position statement from the ERN Coordinators
Released on 28 February 2018 – RARE DISEASE DAY! As Coordinators of the 24 European Reference Networks (ERNs), we stand together and united with our 900 strong members (healthcare providers) and the p …
Rare Disease Day 2018!
The last day of February is Rare Disease Day. This is the day of the year above all others that as a community we try to raise awareness amongst the general public, policy makers, public authorities, …
Share4Rare – the project to develop a new collective awareness platform for social innovation launches!
Based on a socially innovative approach, and building on citizen science and collective intelligence, the Share4Rare Project will engage and connect all relevant stakeholders towards improving quality …
Application for our translational summer school opens
We are delighted to announced that applications are now being taken for our five-day summer school which will be held in Newcastle, UK 2-6th July 2018. The course has been developed for researchers an …
How ERNs are approved?
EU Member States play the lead role in the designation and development of European Reference Networks. To achieve ERN status, network members applied to a Call from the European Commission. This appli …
Adding value for patients and professionals
Patients with rare and complex diseases can spend years without a clear diagnosis. It can be a frustrating and dispiriting experience for patients and their families. Many people living with these con …
What are ERNs?
To review a patient’s diagnosis and treatment, ERN coordinators convene ‘virtual’ advisory boards of medical specialists across different disciplines, using a dedicated IT platform and telemedicine to …
Why rare diseases?
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 are almost 300 different types of rare cancers an …
ERN background
Why rare diseases?
13 Jul 2017Between 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?
13 Jul 2017 -
Adding value for patients and professionals
13 Jul 2017 -
How ERNs are approved?
13 Jul 2017
Recent activities
Neuromuscular Summer School 2018 – Report
19 Jul 2018The first Neuromuscular Translational Summer School was devised and developed by Professor Annemieke Aartsma-Rus (LUMC, Netherlands and Newcastle Univ …
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Kate Bushby announces her retirement
24 May 2018 -
Share4Rare hosts co-creation workshop
22 May 2018
Upcoming events
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Peripheral Nerve Society Annual Meeting
22 July 2018 -
From Pathways of Motor Neuron Degeneration to Interventional Strategies
23 July 2018 -
Duchenne Care Conference
7 September 2018 -
1st European Transition Symposium
14 September 2018 -
2018 MDF Annual Conference
14 September 2018
View complete list of events
