On December 18th, our board presented the topic "How amplify the voices of patients and caregivers in rare and complex epilepsies community", a EPAG EpiCare webinar.
18 December 2025
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complex
and rare
Epilepsies
Every story counts.
Every effort matters.
Fund research,
Spark awareness,
Change lives.
E+ refers to rare, severe, and complex epilepsies that involve more than seizures, including serious neurological and developmental challenges.
Why it is important
E+ epilepsies face challenges like limited policy attention, stigma, unequal access to diagnosis and care, and difficult transitions from pediatric to adult services. Lack of treatment guidelines, multilingual information, and research investment further impact patients. Addressing these issues is vital to improve care and quality of life.
Who is E+A
E+A (Epilepsy+ Alliance) is an alliance advocating for those affected by rare epilepsies, including serious neurological and developmental challenges as an extra (+) burden. It is an alliance of patient groups, families, healthcare professionals, and researchers united to provide support, share knowledge, and advocate.
Strategic priorities
At the heart of our mission are patients and families, guiding every step we take with an inclusive, person-focused approach rooted in ambition and integrity.
- Improved detection and diagnosis
Advancing early and accurate identification of E+ conditions to ensure timely care. - Precision medicine and targeted therapies
advocate for innovative treatments tailored to the unique needs of each patient. - Enhancing quality of life
Supporting holistic care that addresses medical, social, and emotional well-being for patients and their families.
Our objective
Hope. Strength. Union. These aren’t just values — they’re how we move forward.
- Holistic care for Patients and families
- Support for patients, caregivers, and siblings
- Access to effective treatments
- Building a strong European and international network
- Amplifying the voice of patients and caregivers in research and policy
Partnerships
and members
Resources
Access a wide range of downloadable materials designed to support families, caregivers, and healthcare professionals.
Our resources include guides, fact sheets, educational tools, and practical advice to help navigate the complexities of rare and complex epilepsies.
Title
Type
Date
E+ Survey (Part 2)
Survey
10 March 2026
Approved by:
- Research Ethics Committee (EC Research) of UZ/KU Leuven (reference: S71638)
- Research Ethics Committee of the Foundation for the Promotion of Health and Biomedical Research of the Valencian Community (Public Health Research Ethics Committee and External Ethics Committee of the IBSP-CV Biobank and the Valencian Biobank Network) (reference: 20260226/09/P)
News and
announcements
Stay updated with the latest developments, events, and important announcements related to E+.
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We’re honored to see our VicePresident José Ángel Aibar contribute to the American Epilepsy Society dialogue on mortality in DEEs.
7 December 2025
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E+A helped move Europe forward at the European Parliament, where our President, Isabella Brambilla, participated in Panel 3: Partnering for Progress in Europe.
2 December 2025
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Four of our founders took the stage to bring the patient voice to the centre of the discussion alongside the leading voices in epilepsy care at “In Search of Lost Time” Workshop in Rome by ERN EpiCARE - Rare and Complex Epilepsies!
12–14 November 2025
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🌟 E+A Proudly Supported the 7th European GRIN Conference 🌟
17–19 October 2025
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The E+ Alliance is proud to have officially launched our alliance at the 36th International Epilepsy Congress (IEC 2025) in Lisbon.
30 August–3 September 2025
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First Rare and Complex Epilepsies Patient Advocacy Organisations and EpiCARE ePAG Meeting
9–10 May 2025
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Join E+A at the 36th International Epilepsy Congress (IEC 2025)
30 August–3 September 2025
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Contact us
For enquiries, support, or collaboration opportunities, please do not hesitate to get in touch. Our team is committed to providing timely and helpful responses to all your questions and requests.
info@epilepsyplus.org