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
Many children and children-at-heart love the opportunity to embrace Halloween, especially when it involves dressing up, new experiences and fun activities. However, some children and adults, especially many with TSC, might find this time quite overwhelming. With about half of people with TSC being
Click here to book your place at this year's AGM The TSA’s Annual General Meeting (AGM) 2024 will take place virtually on Monday 18 November, 6pm - 7pm The AGM is an important opportunity to hear from the TSA’s Board
Rory O’Sullivan (University of Birmingham) is a final-year PhD researcher focused on the importance of sleep in children with rare genetic conditions, including TSC. We caught up with Rory to discuss his PhD research, what he likes to do in his spare time and
All this week, the TSA is proud to take part in Remember a Charity Will Week. This special campaign is an important reminder of the impact that leaving a charity gift in your Will can have on people facing the challenges of TSC, now
The TSA is a proud member of the Specialised Healthcare Alliance (SHCA), who last year released an important report evaluating the obstacles people face in getting diagnosis of a rare condition. One year on, the SHCA has released a troubling follow-up report showing that not
