Everolimus and TSC related epilepsy – urgent request for your experiences


This is an urgent call out to any families affected by TSC who have experience of using everolimus and have noticed an impact on their epilepsy.

We want to hear from you if:

  • you or someone you care for has taken part in clinical trials using Everolimus to treat epilepsy
  • you or someone you care for has been taking Everolimus to treat epilepsy as part of a compassionate use programme
or if you or someone you care for has been taking Everolimus for TSC brain tumours or TSC kidney tumours, and have seen that Everolimus has had an effect on your epilepsy.

NHS England has asked NICE to pull together an evidence review to inform its consideration of whether the medicine will become routinely available to treat TSC related epilepsy in England, and the TSA has been asked to contribute the views of patients and carers to NICE’s evidence review. This is in response to Everolimus being granted a European License for refractory epilepsy in adults and children READ MORE HERE. A decision by NHS England on whether to routinely fund the medicine for epilepsy is due in December this year.

So now is the time to tell NICE and NHS England about your experiences, and tell us what effect the medicine has had on your epilepsy and your quality of life. We have been given a very short deadline to contribute our views by Friday 14 July.  If you are able to help please let us know as quickly as possible, so that we can book in half-hour telephone call with you early next week to listen to your views.  Thank you!

Email: social@tuberous-sclerosis.org or call Sarah, our Comms Officer, on: 07870 210308