E+

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.

Partnerships

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.

  1. Holistic care for Patients and families
  2. Support for patients, caregivers, and siblings
  3. Access to effective treatments
  4. Building a strong European and international network
  5. Amplifying the voice of patients and caregivers in research and policy

Resources

Coming soon

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.

News and
announcements

Stay updated with the latest developments, events, and important announcements related to E+.

  • Join E+A at the 36th International Epilepsy Congress (IEC 2025)

    30 August–3 September 2025

  • First Rare and Complex Epilepsies Patient Advocacy Organisations and EpiCARE ePAG Meeting

    9–10 May 2025

1/

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.