EpiCARE ePAG

Patient working group & advocates

Between 6,000 and 8,000 rare diseases affect an estimated 30 million people in the European Union.  An unfortunate feature of rare diseases and complex conditions is the fragmentation of specialist knowledge, which is often not available in the patient´s region or country. Many patients therefore might not receive a satisfactory explanation for their symptoms, have delays to correct diagnosis or have access to the necessary knowledge on treatment options, rehabilitation and care.

That is the reason for the ePAG existence : they act as EpiCARE patient representatives, they are the voice of patients and produce deliverables to support patients and their families and to facilitate communication between them and the healthcare professionals.

The EpiCARE Patient Working Group comprises ePAG (European Patient Advocacy Group), Patient Advocates who are either leaders in rare and complex epilepsy patient organisations from across Europe, or patients themselves.

This group enables EpiCARE patient representatives to work together on common issues, and are involved in all EpiCARE activities. The Chair and Co-Chair of the ePAG participate ex officio, are the epicare Executive Committee. Several advocate members also participate in the Working Groups.

EpiCARE ePAG’s produce Patient Journeys and Leaflets to help patients, which you can find here. 

ePAG Meetings

The first online meeting was held on 31st of May 2024. Thank you all for your participation! If you missed it, you can find the summary here!

The next online meeting will be held on 30^th  of August from 6 – 7.30 pm CET. (If you wish to participate or need more information, please contact: epag.epicare@gmail.com)