What we do

  • We have quarterly monthly meetings where we discuss which initiatives we can move forwards with together to make a difference.
  • We have guest participants and would welcome anyone interested to join us to discuss their projects and opportunities and know that they have a far reaching audience rather than meeting each charity individually.

Introducing Rare Epilepsies Together

Watch this video to find out more about what we do as a network…

Our aims:

  • Work together to effect change and raise awareness of rare and complex epilepsies.
  • To engage health care professionals, policy makers, researchers, regulators, pharmaceutical companies and educators.
  • Ensure we are addressing not just seizures but other associated co-morbidities.
  • Share knowledge and opportunities.
  • Ensure equitable access to treatments.
  • Engage and access relevant support services to make an impact on a person and families day to day life.
  • Create a patient registry to understand the size and scale of rare epilepsies to inform commissioners, referral pathways and drive the research agenda going forwards.