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 EpiCARE Patient Empowerment WG: 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 Empowerment Working Group comprises Patient Advocates who are either leaders in rare and complex epilepsy patient organisations (Associations and/or Federations) or patients themselves, from across the European region.
ERN EpiCARE offers the conditions for patient representatives to work together. The Chair and Co-Chair of the EpiCARE Patient Advocacy Group participate ex officio, at the EpiCARE Executive Committee. Several advocate members are active in several other Working Groups. Patient advocates in the field of the epilepsies also collaborate with the International Bureau for Epilepsy (IBE) and the recently created Epilepsyplus Alliance.
EpiCARE patient advocates, together with medical expert produce Patient Journeys and Leaflets to help patients, which you can find here.
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 [email protected].
Please find downloadables resources on the following links :
Teacher Tool Kit to Promote Well-being in Students with Epilepsy
Epilepsy and Student Success Booklets (you can download more, and in different languages, at the following website):
ERN EpiCARE EPAG Chair (Italy)
ERN EpiCARE EPAG Co-Chair (Croatia)
ERN EpiCARE EPAG Secretary (Croatia)
Italy
IAHCRC International Consortium, AHC18+ e.V. Association
Norway
Denmark
SCN2A ITALIA Famiglie in rete (Italy)
SCN8A France (France)
SCN8A Portugal (Portugal)
UK Infantile Spasms Trust (UK)
Hope for Hypothalamic Hamartomas UK (United Kingdom)
Famiglie LGS Italia (Italy)
Stichting Dravet Syndrome (Netherlands)
GLUT1 Deficiency UK (Ireland)
Tess Research Foundation (Luxembourg)
Find the pdfs of the previous newsletters here. If you would like to receive the monthly newsletter of the EpiCARE EPAG, please subscribe here by providing your e-mail address:
