Latest news

EURORDIS have published their vision for a mature ERN system that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment. The recommendations...

The ERN Coordinators Group (ERN CG) met with the European Commission on 27 November 2020 with a very full agenda.  We strongly recommend that network members look at the...

The EJP RD internal call for innovation projects in clinical trials methodologies in limited populations opened on 7 December 2020 and will close on 3 March 2021.  An “Information/Networking Event”...

The first meeting regarding the European Comission’s ‘ERN Capacity & Knowledge Sharing Through Short Term Mobility & Exchanges of Healthcare Professionals’ programme is on 13 November and will be...

The 8th meeting of the European Reference Networks IT Advisory Group was held on 8 October and attended by Darren Shilhan (ERN eUROGEN Lead IT & Data Performance Analyst). Expected...

There is still no clear picture of how UK healthcare providers, clinical experts and patient organisations involved in the ERNs will be able to collaborate from 1 January 2021....

The first internal meeting of the ERN Coordinators Group (CG) took place on 4 November and was attended by Wout Feitz (ERN eUROGEN Coordinator) and Michelle Battye (ERN eUROGEN...

The CEF 2020 proposal written by the ERN eUROGEN Coordination Team was successfully submitted on 3 November. This application is for funding earmarked for ERNs, so the chances of success are far higher. The proposal will fund...