Name Tuberous Sclerosis (TSC)
Related to/Also known as Tuberous Sclerosis Complex

Bourneville disease

Symptoms of Tuberous Sclerosis
Tuberous Sclerosis is a complex multi-system disorder, which produces tuber-like growths on the brain. These calcify with age, and can also be found on other organs including the heart, skin and kidneys. It affects people in many different ways and with varying severity.
Useful national contacts Tuberous Sclerosis Association
P.O. Box 8001
Derby DE1 0YA
Link opens in new window www.tuberous-sclerosis.org
Tel: 01332 290734
Find your nearest support group:
Link opens in new window https://tinyurl.com/y8nl62m9
Children & young people Early Years (Tuberous Sclerosis Association)
Link opens in new window www.tuberous-sclerosis.org/early_years.html
Online resources Tuberous Sclerosis (NHS Choices)
Link opens in new window https://tinyurl.com/yb2wzyut

Tuberous Sclerosis Fact Sheet (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/lsrjno

Rare Disease UK(RDUK) is the national alliance for people in the UK with rare diseases
Link opens in new window www.raredisease.org.uk/

RareShare is a unique social forum, building communities for patients, families, and healthcare professionals affected by rare disorders.
Link opens in new window www.rareshare.org

News and Events The 100,000 Genomes Project is looking for people with Tuberous Sclerosis for research into their DNA and genes

Link opens in new window www.genomicsengland.co.uk/taking-part

Our resources

The library at The Brain Charity has a range of resources on Tuberous Sclerosis and on a wide range of disability-related issues.

Turbo & Scott

This includes copies of Turbo & Scott, a graphic novel aimed at teenagers.