The Voice of Rare Disease
Patients in Europe
Get involved in European Reference Networks
Due to the nature of rare diseases, small patient populations are often scattered across the EU, sometimes in isolated locations where expertise does not exist or cannot be accessed. A doctor with the expertise needed to help treat a patient living with a rare disease may be based in another country.
European Reference Networks (ERNs) will provide for the first time a unique opportunity for clinicians to work cross border in Europe in order to tackle this challenge. They are networks of centres of expertise and healthcare providers that support clinicians and researchers to share expertise, knowledge and resources across the EU. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care.
The European Commission launched the first call for interest from networks wanting to become ERNs in March 2016. 24 applications have been received with 370 hospitals and almost 1000 highly specialised units involved. Successful ERN applications will be announced in early 2017
ERNs use relevant communication and eHealth tools to enable the mobility of expertise across borders, rather than the movement of patients who travel to access care that does not exist in their country.
ERNs are required to involved patients. EURORDIS is laying the groundwork for the participation of patients in the activities and governance of ERNs:
European Patient Advocacy Groups (ePAGs)
It is unfeasible to create a separate ERN for every one of the over 6000 existing rare diseases that exist; ERNs have therefore been organised according to disease groupings*. In early 2016 EURORDIS developed aEuropean Patient Advocacy Group (ePAG) for each of the ERN disease groupings. ePAGs will bring together elected patient representatives and affiliated organisations to ensure that the patient voice is heard throughout the ERN development process. Through the ePAGs, patient representatives have been directly involved in the development of ERN applications, a great achievement and a milestone in increasing the role of patients in clinical care as it evolves in Europe.
Join a European Patient Advocacy Group
If you represent a patient organisation and are interested in joining an ePAG you can register your interest using this patient organisation matchmaking tool. There is no limit to the number of member organisations per ePAG. All patient organisations are encouraged to join, non-members and members of EURORDIS alike.
As an ePAG member organisation, you will be consulted on specific ERN topics and the ePAG patient representative will relay your opinions back to your respective ERN Board. You will also receive information and updates on the activity of your ERN.
Become an ePAG patient representative
Earlier this year, 86 ePAG patient representatives were elected to represent the wider patient community in the development of ERNs. ePAG patient representatives have an official permanent mandate to represent ePAG member organisations. They liaise with these organisations to ensure true and equitable representation of the patient voice by participating in the Board and sub-clinical committees of their respective ERN.
The recruitment of these representatives is ongoing to ensure that patients are fully represented in the governance of each and every ERN. Patient representatives have already been elected to numerous ERNs but additional applications are welcome for all networks, and in particular for the cardiac and transplantation in children ERNs. Members and non-members of EURORDIS are encouraged to apply. If you are interested in becoming an ePAG representative please contact firstname.lastname@example.org.
EURORDIS is also implementing an ePAG leadership capacity-building programme, which will empower ePAG patient representatives with the knowledge and skills they need to be able to effectively participate in ERN activities.
For more background information on ERNs read the EURORDIS ERN guide for patient advocates!
*Rare cancers are covered by three ePAGs rather than just one (adult cancer, genetic tumours and paediatric cancer).
Eva Bearryman, Communications Manager, EURORDIS