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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)

  • 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)

  • 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 (the AWMSG has not yet issued guidance on this topic)

Health and Social Care Northern Ireland (HSCNI)

  • 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

For more information on medicine advice for Tuberous Sclerosis Complex, please contact the Tuberous Sclerosis Association via admin@tuberous-sclerosis.org.

NHS England

Make a one off or regular  donation

£10 Means that we can send a support 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.