Getting Ready for European Reference Networks



The Voice of Rare Disease
Patients in Europe

Getting Ready for European Reference Networks

European Reference Networks (ERNs) create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders.

Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERNs that is being established can bring real added value to rare disease patients. ERNs aim to provide healthcare professionals with access to expertise that they may not have in their country.

Call for European Reference Networks

The European Commission will launch a call for applications from networks that want to become an ERN in early 2016.

EURORDIS has developed a new web section with links to materials on how to prepare for this call. The European Commission website on ERNs also sets out the stepwise assessment process for applications from networks that want to become an ERN. Presentations from the recent 2nd European Commission conference on ERNs are also available, including a presentation on The Patient's View, given by EURORDIS.

The Partnership for Assessment of Clinical Excellence in European Reference Network (PACE-ERN) Consortium (with EURORDIS at its lead, together with HOPE and Accreditation Europe) has been asked to develop the technical proposal that outlines the European Commission's manual and technical toolbox for the assessment of applications from networks wanting to become ERNs. This manual and toolbox has two parts:

1. For networks applying to become an ERN
2. For the independent bodies that assess applications from networks wanting to become an ERN

Patient-centric European Reference Networks

Patient organisations are not legally required to participate in the governance and evaluation of ERNs. However, ERNs are required to demonstrate patient-centric care and patient empowerment.

Due to the complexity and low prevalence of rare diseases, as well as to the limited body of expertise in rare diseases, the role of rare disease patients (as experts in their diseases) in the development of ERNs is even more crucial. A higher level of involvement of patients in the decision- and opinion-making processes surrounding ERNs is essential to ensure their successful development.

The June 2015 Addendum to EUCERD Recommendations on ERNs outlines detailed recommendations on how patient representatives can fully participate in the development of ERNs.

EURORDIS Patient Advocacy Groups

It is unfeasible to create a separate ERN for every one of the over 6000 rare diseases that exists; ERNs will therefore be organised according to disease groupings. The proposed list of groupings is also included on page 7 of the June 2015 Addendum. 

EURORDIS aims to ensure that every person living with a rare disease, including the undiagnosed, finds a home within the ERN system, if not immediately then progressively over the coming years.

EURORDIS is developing a EURORDIS Patient Advocacy Group (EPAG) for each ERN disease grouping. These EPAGs will bring together elected patient representatives from EURORDIS member organisations and will ensure that the patient voice is heard throughout the ERN development process. This structured approach towards patient representation in ERNs will enable EURORDIS to support patient engagement, mutual support between representatives and cohesiveness.

If you are from a EURORDIS member organisation based in the EU and interested in being involved in an EPAG please email anja.helm@eurordis.org.

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Eva Bearryman, Junior Communications Manager, EURORDIS

Page created: 02/12/2015
Page last updated: 02/12/2015

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