We are calling on NHS England to make use of the evidence provided by patients and families when, in November, the Specialised Commissioning Clinical Priorities group meet again to review its decision not to fund everolimus.    

Patients, families, carers and clinicians are clear that this drug is life-changing and life-saving when used to treat uncontrolled epilepsy related to tuberous sclerosis complex (TSC), a rare and debilitating disease. Everolimus significantly reduces both the frequency and severity of seizures and risk of sudden death from epilepsy.    We are shocked that, in making its initial decision, NHS England ignored evidence from patients who received the drug during clinical trials. When reconsidering the decision, NHS England must take this evidence into account, so that the right conclusion is reached.

Please sign and share this petition calling on NHS England to take into account patient evidence and fund everolimus for the treatment of TSC-related epilepsy.