The Tuberous Sclerosis Association (TSA) was formed in 1977 by a group of parents, affected individuals and doctors interested in promoting greater understanding of the condition and providing mutual support for affected families.

Our team of Specialist Advisers offer advice on a wide range of issues associated with TSC, as well as liaising with with professionals and recommending additional sources of help.

The TSA produces a large selection of published information much of which can be downloaded from this website. There is an illustrated medical brochure for doctors, leaflets specially written for nurses and facsheets on a variety of topics (eg. epilepsy, behaviour, skin treatment, brain imaging).

The publication Scan appears three times a year and is an opportunity for members to share news, information, experiences and opinions. It includes updates on research, treatment and management of TSC and welcomes contributions from families and professionals.

Over the years the TSA has contributed significant sums of money on genetic research in particular, which helped lead to the discovery of the genes causing TSC and the development of DNA tests.  A vairety of other research continues to be funded by the TSA, including social, behavioural and clinical projects and we continue to play a major role in  TSC research.

TSA events: Study Days for professionals an Education and Information Training Days for parents and carers are held throughout the year in the UK. The International TSC Research Symposium, held every 3 or 4 years provides an opportunity for doctors and scientists researching into all aspects of the disorder to share their newly acquired knowledge.

Members of the association have the opportunity to meet together at our very popular events. Family events are held throughout the year and are a chance for families to get together and share experiences of TSC. The annual Outlook weekend is organised for the 40-50% of adults with TSC who live independent lives. Their weekend is an opportunity to share experiences, including work, leisure and relationships.

Our online discussion forum helps people to make connections and provides support whether they are a parent, a person with TSC or a sibling.

Tuberous Sclerosis Association is a Company Limited by Guarantee Registered in England No. 2900107 Registered Charity No. 1039549