UK Rare Epilepsies Together

For all patient groups supporting those living with rare and complex epilepsies

Living with difficult to control (refractory) epilepsy and its commonly associated comorbidities presents many challenges for the individual and their families. Through participation in EpiCARE and the Rare Epilepsy Network (REN) Ring20 have become aware that whilst there may be many different causes for the seizures, we all share in common unmet needs. As individual charities we currently work to address those needs quite separately – just think what impact we could have if we got together?

The aim of UKRET is to bring together like-minded charities and support groups in the UK to see how we might work more collaboratively to support our rare and complex epilepsy communities on a national level to have an even bigger impact.

Together we can seek to raise greater awareness through educating clinicians, researchers, academics, policymakers, payers, social care and more in the needs of our shared community, with a goal of improving outcomes and overall quality of life for individuals and their families.

If your charity or organisation would like to join our group, contact Allison using the form below. 

We would also love to hear from any individual or company that would like to collaborate with us and help us in our work:

Don’t forget to sign-up – places are strictly limited…

UK Rare Epilepsies Together

Next meeting

Our next call is on Tues 2nd May ’23 12:30-1:30pm.

Email us if you haven’t received the Zoom invite.

Our next meeting date will be displayed here.

Key activities:

  1. Working with DWP on creating PIP assessment criteria specifically for rare epilepsies
  2. Collectively presenting our unmet needs at a forthcoming UK event dedicated to rare epilepsies in Sept 2022.
Other sharing opportunities:
    • The way forward for CBMPs and general access to anti seizure medications
    • Genomics research for epilepsy diagnosis
    • Collective input to NICE guidelines for epilepsy
    • Exploring the potential of a collaborative rare epilepsies registry – watch the presentation below

Recording of call 7th Feb 2023.