Advice on medicines
Advice for medicines related to Tuberous Sclerosis Complex for England, Scotland, Wales and Northern Ireland
The NHS across England, Scotland, Wales and Northern Ireland has issued advice for healthcare professionals on the use of specialist medicines for the treatment of Tuberous Sclerosis Complex (TSC). You can find links to the relevant advice on this page.
If advice has not been issued for a specific nation and for a particular drug or indication – or the manufacturer has not submitted an application – you can submit an Individual Funding Request (IFR) to make a case for prescribing the medicine to an individual patient who meets the criteria for treatment.
NHS England
- Everolimus for subependymal giant cell astrocytoma (SEGA)-associated TSC (click here)
- Everolimus for angiomyolipoma (AML)-associated TSC (click here)
- Everolimus for TSC-related refractory epilepsy (click here)
Scottish Medicines Consortium (SMC)
- Cannabidiol for TSC-related refractory epilepsy (click here)
- Everolimus for subependymal giant cell astrocytoma (SEGA)-associated TSC (click here)
- Everolimus for angiomyolipoma (AML)-associated TSC (click here)
- Everolimus for TSC-related refractory epilepsy (click here)
All-Wales Medicines Strategy Group (AWMSG)
- Cannabidiol for TSC-related refractory epilepsy (click here)
- Everolimus for subependymal giant cell astrocytoma (SEGA)-associated TSC (click here)
- Everolimus for angiomyolipoma (AML)-associated TSC (click here)
- Everolimus for TSC-related refractory epilepsy (click here)
Health and Social Care Northern Ireland (HSCNI)
- Cannabidiol for TSC-related refractory epilepsy (click here to see guidance, under ‘Cannabidiol (Epidyolex®)’ on April 2022)
- Everolimus for subependymal giant cell astrocytoma (SEGA)-associated TSC (the HSCNI has not yet issued guidance on this topic)
- Everolimus for angiomyolipoma (AML)-associated TSC (the HSCNI has not yet issued guidance on this topic)
- Everolimus for TSC-related refractory epilepsy (click here to see guidance, under ‘Everolimus dispersible tablets (Votubia®)’ on September 2018)
Make a one off or regular donation
£10 Can allow us to send a welcome pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.
£25 Can help us develop materials that are included in our support services, flagship events or campaigns.
£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.
To provide help for today and a cure for tomorrow