Tuberous Sclerosis Alliance - TSA

Organization URL(s)

Other Contact Information

801 Roeder Road
Suite 750
Silver Spring, MD 20910

800-225-6872 (Voice - Toll-free)
301-562-9890 (Voice)
301-562-9870 (FAX)

Description

The Tuberous Sclerosis Alliance (TSA), formerly the National Tuberous Sclerosis Association (NTSA), was established in 1974 to provide fellowship, generate awareness, pursue more knowledge and provide hope to those that shared the common bond of tuberous sclerosis. The Association's goals include identification of persons with this disorder; identification of knowledgable individuals in the helping professions; education of patients' families, professionals, and the public; promotion of research; development of a national medical registry; and communication among families of tuberous sclerosis patients. NTSA has established a network of area representatives providing group meetings and telephone contact between families.

Online Resources

Questions and Answers About Tuberous Sclerosis Complex
http://www.tsalliance.org/pages.aspx?content=117

Print Resources

NTSA publishes fact sheets, brochures, booklets for parents, publications lists, and articles on various topics related to tuberous sclerosis. Serial publication: Newsletter, quarterly.