The National Institute of Health and Social Care Excellence (NICE) has approved funding of fenfluramine (brand name Fintepla, developed by UCB Pharma) on NHS England to treat seizures associated with Lennox-Gastaut Syndrome (LGS), a rare epilepsy that some people with TSC also have. This
Scottish decision-makers have announced that fenfluramine (brand name Fintepla, developed by UCB Pharma) can be prescribed on NHS Scotland to treat seizures associated with Lennox-Gastaut Syndrome (LGS), a complex and very difficult to treat form of epilepsy that some people with TSC also have.
Decision-makers in Scotland have agreed to fund Hyftor (topical sirolimus) through NHS Scotland to treat facial angiofibromas (marks and bumps on the face caused by TSC) The TSA is delighted that the Scottish Medicines Consortium (SMC) has recognised that Hyftor (topical sirolimus) is an
The TSA is a proud member of the Association of Medical Research Charities (AMRC), a membership organisation dedicated to supporting medical research charities in their efforts to save and improve lives through research and innovation. In recognition of our great work, the AMRC invited
#TeamTSA at the London Marathon raises a record-breaking £24,720 to support the TSC community!  Last weekend, nine amazing individuals took on the London Marathon 2024 to improve lives in the TSC community. All of their hard work was worth it, with over £24,000 raised
Key decision-makers in England have upheld an appeal by the TSA and others to rethink whether or not to approve funding for fenfluramine, a medicine that some people with TSC could benefit from The National Institute for Health Care and Excellence (NICE) decides whether
We're delighted to confirm that the latest issue of Scan, our community magazine, is now complete and ready to read! Scan is always extremely popular with the TSC community, giving you a round-up of everything we've been working on to improve lives in the
This week we held our Annual General Meeting 2024, an important opportunity to get an inside view of the charity from the TSA's Board of Trustees and senior staff The first section of the AGM is now available to re-watch. It includes: Discuss of
From now until 10 December, all donations made to us through The Big Give will be DOUBLED at no extra cost to you! We’re aiming to raise £9,000 to help fund our vital support and information services throughout 2025. This includes our completely free support
The TSA will host it's Annual General Meeting (AGM) 2024 on Monday 18 November. At the AGM, a vote will take place on whether to welcome two new potential Trustees onto the board. Here, you can find out more about them Everyone in the TSC
