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.
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 30th of August from 6 – 7.30 pm CET. (If you wish to participate or need more information, please contact: epag.epicare@gmail.com)
United Kingdom
Sandra Silva Arrieta (Spain) Marita Gunn Sandnes (Norway) Amela Huskic (Denmark)
Portugal
If you wish to join EpiCARE ePAG please read the Terms of Reference approved by ePAG EpiCARE and fill in an online application form.
The application form is also available in pdf format, as well as the endorsement letter template. Both of these can be downloaded through the links below. Please complete these and return the signed documents to epag.epicare@gmail.com.
Please find downloadables resources on the following links :
If you would like to receive the monthly newsletter of the EpiCARE ePAG, please subscribe here by providing your e-mail address:
Find the pdfs of the previous newsletters here:
2023
2024
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Funding
The ERN EpiCARE was created in 2017 and is co-funded by the European Union.
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