The Tuberous Sclerosis Association

TSA (The Tuberous Sclerosis Association), an international, self-help organization located in the United Kingdom, was founded in 1977 by a group of parents and interested physicians dedicated to providing support to individuals with TS (Tuberous Sclerosis) and their families, increasing awareness of the disorder, and promoting fundraising to support research. TS a rare genetic disorder that affects the skin and nervous system, may be characterized by the evolution of white brown or red birthmarks, skin patches, and/or a characteristic facial rash across the cheeks and nose; episodes of uncontrolled electrical disturbances in the brain that resons convulsive seizures (epilepsy); developmental delays; and/or the development of benign tumours, particularly of retina, kidney, the brain, heart, and skin and mental retardation in some cases. The TSA has helped to establish specialist, multidisciplinary TS clinics in Bath, Leeds, Northern Ireland (Craigavon), Cambridge and Scotland (Edinburgh). The TSA also supports and promotes research into the source and administration of TS through its Education and Research Fund is in match with over 1,000 affected families worldwide; and offers networking possibilities to affected families that enable them to exchange information, support, and resources.