- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
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- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
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- News & Events
News on European Reference Networks (ERNs)
Videos
The European Commission has produced a range of videos to explain what European Reference Networks really mean for patients. Watch the stories of Elisa, Jasper, Paula and Daniel!
eNews
Get involved in European Reference Networks
September 2016: EURORDIS is laying the groundwork for the participation of patients in the activities and governance of ERNs
Newly elected ePAG patient representatives
May 2016: The newly elected ePAG (European Patient Advocacy Group) patient representatives have now been announced.
Getting ready for European Reference Networks
December 2015: The European Commission will launch a call for applications from networks that want to become an ERN in early 2016.
EURORDIS Membership Meeting 2015 Focuses on European ReferenceNetworks
June 2015: The 2015 EURORDIS Membership Meeting was abuzz with networking between over 250 participants who travelled from all over the world to Madrid.
eNews: EURORDIS & PartnersWin Call for Tender to Develop ERN Manual & Toolbox
February 2015: The Partnership for Assessment of Clinical Excellence in European Reference Network (PACE-ERN) Consortium, with EURORDIS as its lead, won anEU Commission call for tenderto develop a ERN manual and toolbox.
What is a European Reference Network?
January 2015: ERNs createa clear governance structure for knowledge sharingand care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders.
EURORDIS Press releases
December 2016
February 2017
European Commission's DG Sante wins EU Ombudsman for EU Collaboration on rare diseases
March 2017
Related eNews:
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative