In the UK, 1 in 17 people will be affected by a rare disease at some point in their life: this amounts to approximately 3.5 million people. Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Many of

A new project has been launched by The Salvesen Mindroom Centre, in collaboration with The University of Edinburgh and The James Lind Alliance and the team behind it would love to get the opinions of as many people as possible.   Research Priorities for Learning Difficulties in Children and

The Bristol Regional Group met on Saturday, 10 June at Windmill Hill City Farm for the first time. The venue proved to be a big draw with around 20 adults and children affected by TSC from the South West regional coming along to enjoy the

Hello. My name is Louise Fish, and I have been in post as the TSA’s new Chief Executive since 5 June.  As many of you already know, the TSA is celebrating its 40th anniversary this year and I am honoured to be the organisation’s second

Between Wednesday 14 June and Friday 16 June please take a look at our Twitter feed www.twitter.com/uktsa where we are supporting the Association of Medical Research Charities #charityimpact campaign. The @AMRC Twitter campaign is aiming to show just how much money 140 UK charities, including the Tuberous Sclerosis Association, are contributing

The TSA is thrilled that TSA Trustee and Head of Research Strategy Dr Chris Kingswood has won the 2017 Manuel R. Gomez Award. Dr Kingswood received this award on Thursday 22 June 2017 at the US TS Alliance and LAM Foundation ‘2017 International Research Conference

The TSA would like to send huge congratulations to Professor Julian Sampson who has been awarded the 2017 Manuel R. Gomez Award. Professor Sampson received this award on Thursday 22 June 2017 at the US TS Alliance and LAM Foundation ‘2017 International Research Conference on

This is an urgent call out to any families affected by TSC who have experience of using everolimus and have noticed an impact on their epilepsy. We want to hear from you if: you or someone you care for has taken part in clinical trials

Help us choose our TSA Christmas card designs for sale this year. We'd like you to help us to choose our Christmas card designs which we will be selling this year. The voting has started and if you go to our Facebook page here you

This is a message to say a huge thank you to everyone in our TS community who has responded so readily to our recent call for information about Everolimus and Epilepsy. Since we posted our urgent request for help on our website, our Facebook page,