The + Alliance will be attending the 16th European Epilepsy Congress, taking place in Athens from 5–9 September 2026. Click "Read more" to see all the contributions of E+ Alliance members.
5 - 9 September 2026
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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
🫱🏻🫲🏻 COLLABORATIONS 🫱🏻🫲🏻
• EpiCARE — The European Reference Network for Rare and Complex Epilepsies (EU)
• EFNA – European Federation of Neurological Associations (EU)
• REN — Rare Epilepsy Network (US and Canada)
• IBE – International Bureau for Epilepsy (Global)
🩷 FULL MEMBERS of E+A 🩷
CROATIA:
• Dravet sindrom Hrvatska
FRANCE:
• Association contre les Maladies Mitochondriales
• KCNQ2 France Development
• Alliance Syndrome de Dravet
GERMANY:
• Syngap Elternhilfe e.V.
ITALY:
• Associazione Italiana GLUT1
• Fondazione Dravet ETS
• Unione Italiana Nexmif
LUXEMBOURG:
• AAPE – L’Association d’Aide aux Personnes Epileptiques
NETHERLANDS:
• EpilepsieNL
POLAND:
• PACS2 Research Foundation
• Dravet.pl
SPAIN:
• Fundación para la Investigación del Síndrome de Dravet
UK:
• CDKL5 UK
• UKIST – UK Infantile Spasms Trust
• Matthew’s Friends
• HOPE for epilepsy
EUROPE:
• GRIN Europe
💜 ASSOCIATED MEMBERS of E+A 💜
CZECH REPUBLIC:
• Epicana
FINLAND:
• Epilepsialiitto
FRANCE:
• Association Enfants CASK France
• Dup15q France
• Sclerose Tubereuse de Bourneville
GEORGIA:
• Georgian Rett syndrome and other rare diseases association
• SCN2A Georgia
GERMANY:
• CDKL5 Deutschland e.V.
• KCNQ2 e.V.
• STXBP1 e.V.
ITALY:
• Associazione Famiglie LGS Italia
• Insieme per la ricerca PCDH19 – ETS
• OR.S.A – Organizzazione Sindrome di Angelman
• Associazione Sindrome di Sturge Weber Italia
• Famiglie SYNGAP1 Italia
LATVIA:
• Epilepsijas biedrība “Aura”
LUXEMBOURG:
• Association Luxembourgeoise du Syndrome de Rett
NORWAY:
• Epilepsiforbundet Dravet syndrom
• Forening for Sjeldne Nevroutviklingsforstyrrelser
• Norsk forening for Tuberos Sklerose Kompleks
SERBIA:
• Life – Association for Rare Diseases in Children
SLOVAKIA:
• CDKL5 Slovakia
SPAIN:
• Asociación KCNQ2 España
• De Neu – Asociación de Enfermedades de los Neurotransmisores
• Asociación Afectados CDKL5
SWEEDEN:
• Svenska Epilepsiforbundet
SWITZERLAND:
• Dravet Suisse
• SLC6A1 Switzerland
UK:
• Pitt-Hopkins UK
• Rett UK
• Dravet syndrome UK
• Epilepsy sparks
UKRAINE:
• Access to Life
EUROPE:
• European KCNQ2 Association
🧡 GLOBAL PARTNERSHIPS of E+A 🧡
USA:
• AHC Foundation – Alternating Hemiplegia of Childhood Foundation
• STXBP1 Foundation
• Koolen-de Vries Syndrome Foundation
LATIN AMERICA:
• Espacio Epilepsia
AUSTRALIA:
• SCN2A Australia
GLOBAL:
• IAHCRC – International Consortium for the Research on Alternating Hemiplegia of Childhood
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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E+ Alliance was pleased to participate in the EpiCARE Annual Meeting 2026 in Leuven, Belgium, represented by our President, Isabella Brambilla.
16 - 18 June 2026
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On the 13th European Conference on Rare Diseases & Orphan Products (ECRD 2026) in Prague, Isabella Brambilla, President of E+ Alliance, joined experts from across Europe in the session “Rethinking Mental Health in Rare Conditions: From Undefined Challenges to Collaborative Solutions."
4 June 2026
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The E+ Alliance participated in the International Drug Repurposing Conference (iDR26), which brings together the global drug repurposing community to navigate the next chapter in maximising patient benefit.
12 - 13 May 2026
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E+ Alliance participated in the 7th Dianalund International Conference on Epilepsy, taking place in Køge (Denmark). A unique event which connected clinicians, researchers, patients’ perspectives, and industry around the shared goal of improving outcomes in DEEs..
6 - 8 May 2026
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E+ Alliance was proud to represent the rare and complex epilepsy community at the European Expert Patient Council Meeting hosted by Angelini Pharma in Rome, Italy.
18 - 19 April 2026
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E+ present among global leaders convening around rare epilepsy in Windsor, UK, coordinated by the International Bureau for Epilepsy (IBE).
10 - 11 April 2026
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E+A represented by Sandra Silva Arrieta participated at the Strategy Summit hosted by Lundbeck highlighted what meaningful innovation in brain health should look like.
23 March 2026
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E+ Alliance was proud to participate in the European Dravet Syndrome Conference 2026, bringing the patient voice to important discussions on clinical research and trial design, strengthening collaboration and promoting patient-centred research and policies.
19 - 20 March 2026
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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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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