Tuberous Sclerosis Association

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