Strengthening Europe’s Rare Epilepsy Voice Through the E+ Alliance

The E+ Alliance presentation outlines a fast‑growing European network dedicated to improving the lives of people with rare and complex epilepsies through collaboration, shared expertise and coordinated advocacy. E+ brings together patient organisations, clinicians, researchers and partners across Europe to address fragmentation in care, strengthen the evidence base and drive policy change. Its structure includes working groups focused on networking, research, branding, strategic projects and policy, each contributing to a unified roadmap for growth and impact. A major goal is to expand to 100 member associations by mid‑2026, ensuring broad representation and a strong collective voice.

The presentation highlights key initiatives, including a pan‑European burden‑of‑disease survey, a patient transition charter, innovation and grant activities, and new thematic subgroups such as the ketogenic diet group. Mental health emerged as a cross‑cutting priority, with clear recommendations to integrate psychosocial support into rare epilepsy care and recognise the essential role of patient organisations.

IMP is pleased to be a founding member of this ambitious alliance, contributing to a shared European effort to strengthen patient representation and accelerate progress. We are also proud that our board member, Emma del Rey, serves on the E+ Board, helping shape its strategic direction. This collaboration marks an exciting step in amplifying the voices of our community across Europe.

Complete the survey!

E+ and EpiCARE have just launched a new survey to better understand the realities of patients and families across Europe.

If you are a patient, caregiver, or family member, your voice can make a real impact. The survey is completely anonymous, and vailable in 15 languages. 

We encourage those who have relevant lived experience to contribute to the survey. Your answers will strengthen care, research and advocacy across Europe