Eurordis - Rare Disease Europe

European Patient Advocacy Groups in action!

In 2016 EURORDIS launched the ePAGs (European Patient Advisory Groups) to ensure patients are integrated in the development, governance and operations of the European Reference Networks (ERNs).

European Reference Networks

In 2017 over 900 highly-specialised medical teams from all over Europe joined forces in 24 ERNs to tackle rare or complex diseases that require highly specialised treatment and a concentration of knowledge and resources. These virtual networks will help to ensure that expertise and knowledge travels across borders, rather than the patient. ERN kick-off meetings have been taking place all over Europe in 2017.

More information on ERNs:

• In four new videos produced by the European Commission, patients Elisa (also available with subtitles in Italian), Paula (subtitles in Spanish), Jasper (subtitles in Dutch) and Daniel (subtitles in French) explain how the networks will help them.
• View the European Commission’s full list of ERNs with accompanying factsheets and links to individual ERN websites.
• Find out which healthcare providers are members of each ERN in your country by downloading the zip files available here. Healthcare providers can contact their national representative on the Board of MS of ERNs if they wish to engage in an ERN.
• EURORDIS has also developed summary reports detailing the structure and goals of each ERN that are hosted on the RD-Action website.

To review a patient’s diagnosis and treatment, healthcare providers consult, exchange information and share knowledge with other members in their ERN. Coordinators and other networks leaders convene ‘virtual’ advisory boards of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools. More information on the scope of ERNs.

The European Patient Advocacy Groups

ePAGs bring together elected patient representatives and affiliated organisations to ensure that the patient voice is heard in the development of ERNs.

Register your patient organisation as an ePAG member organisation

To receive updates and be consulted on the activity of the ERN relevant to your disease, register the interest of your organisation in becoming an ePAG member organisation indicating which ERN you wish to be affiliated to. Membership of ePAGs is open to all rare disease patient organisations (EURORDIS members and non-members based in the EU).

ePAG patient representatives

There are over 100 ePAG patient representatives who have an official permanent mandate to represent ePAG member organisations in their respective ERN, as well as to consult them on ongoing ERN activities. They liaise with these organisations to ensure true and equitable representation of the patient voice when participating in the Board and sub-clinical committees of the ERN.

EURORDIS is particularly seeking ePAG representatives for the ERN on craniofacial anomalies and ear, nose and throat (ENT) disorders. Please contact us at PEM-ePAGs@eurordis.org

An ePAG satellite meeting took place alongside the EURORDIS Membership Meeting 2017 in May in Budapest. This meeting marked the first time ePAG representations from all 24 ERNs came together to share their expectations and take steps towards cross-ERN collaboration.

Participants at the EURORDIS Membership Meeting 2017 Budapest also took place in a workshop on how to make ERNs a reality.

ePAG Representative Mentoring Programme

EURORDIS has created an ePAG Representative Mentoring Programme with the aim of empowering ePAG representatives to be equal and valued partners who can act with autonomy and authority in their respective ERN Board or committee. Mentors originate from a variety of backgrounds (patient groups, business executives, communication and leadership consultants, the European Commission, healthcare consultancies, healthcare professionals, etc).

For more information please contact us at PEM-ePAGs@eurordis.org.

Eva Bearryman, Communications Manager, EURORDIS