Partner

International Partners & Networks

Families affected by KCNQ2 benefit greatly from international collaboration and shared knowledge.

The following associations and networks provide support, expertise, informational resources, research initiatives, and connections to specialized medical centers. This page presents partners in Europe and worldwide, contributing to improved understanding and care for KCNQ2-related epilepsies.

Germany

Achse e.V. - Alliance for Chronic Rare Diseases
Sekis Trier - Self-Help Contact and Information Center Association

Europe

European KCNQ2 patient and family associations

European KCNQ2 Association (EKA) – Italy / Europe
Asociación KCNQ2 España – Spain
KCNQ2 France Développement – France
Fundacja KCNQ2 Polska – Poland

European care and research networks

These initiatives support diagnostics, treatment pathways, and research related to rare epilepsies, including KCNQ2-DEE:

EpiCARE – European Reference Network for rare and complex epilepsies
E + A Alliance – Epilepsy & Allied Alliances

Global

The KCNQ2 Cure Alliance connects families worldwide, provides information resources, organizes events, supports research, and advocates for improved treatment options and understanding of KCNQ2-associated epilepsies.

KCNQ2 Cure Alliance – global support and advocacy network
The Rare Epilepsy Network (REN) is an international network that promotes research, collaboration, and knowledge exchange on rare epilepsies while supporting affected families worldwide.

Purpose of international collaboration

These partnerships aim to:

  • provide access to shared expertise and reliable knowledge
  • connect families across borders
  • strengthen pathways to specialized medical care
  • support research and participation in studies
  • build a connected global community

This page will be updated regularly as new partnerships develop.