UK Rare Epilepsies Together

For all 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 this group is to bring together like-minded charities and support groups in the UK to see how we might work more collaboratively to support our national rare and complex epilepsy communities even better.

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

Next meeting

Our next call will be on 5th Aug 12:30-1:30pm.

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

Days
Hours
Our next meeting date will be displayed here.

Agenda items

  1. Working with DWP on reviewing the PIP assessment criteria
  2. Collectively presenting our unmet needs and how we’d like to work to address them in the UK at forthcoming events in 2022.
  3. Sharing opportunties:
    1. The way forward for CBMPs
    2. Genomics research for epilepsy diagnosis