| Directory > Health > Conditions and Diseases > Neurological Disorders > Neurodegenerative Diseases > Tuberous Sclerosis Tuberous Sclerosis Alliance
US advocacy and support organization provides information about tuberous sclerosis complex,
research on its genetics and treatment, and support for patients and their families.
http://www.tsalliance.org/
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Matthew's Site for Tuberous Sclerosis Awareness
Personal journal of a mother focused on her son's rare genetic disorder, which causes tumors in
multiple parts of the body and causes neurological symptoms. Includes patient stories.
http://www.angelfire.com/la3/tsc
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Team Tamara
Nonprofit dedicated to raising awreness about Tuberous Sclerosis Complex; raising fund for The
Children's Hospital of Phila., The Epilepsy Foundation, The Tuberous Sclerosis Alliance. Includes
info links and Tamara's health updates.
http://www.team-tamara.org
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NORD: Tuberous Sclerosis
Offers alternative names, a general discussion and further resources.
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Tuberous%20Sclerosis
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Marian's Life with Tuberous Sclerosis
Marian's story. Information about the disease, pictures, contacts, medicine, links.
http://www.expatworld.de/marian
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Information and support for persons affected by Tuberous Sclerosis Complex in Canada.
Site includes contact e-mail sites for board members across Canada, fact sheets about TSC, a forum
for sharing information, and portions of the TSCST newsletter, Connections.
http://www.tscst.org
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Tuberous Sclerosis Fact Sheet
Developed by the National Institute of Neurological Disorders and Stroke (NINDS).
http://www.ninds.nih.gov/health_and_medical/pubs/tuberous_sclerosis.htm
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Pediatric Oncall- Tuberous Sclerosis
Offers commonly asked questions about this disease.
http://www.pediatriconcall.com/forpatients/CommonChild/tuberous_sclerosis.asp
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Pediatric Database
A definition of tuberous sclerosis, followed by the epidemiology, pathogenesis, clinical features,
investigations and management.
http://www.icondata.com/health/pedbase/files/TUBEROUS.HTM
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National Library of Medicine
A list of synonyms, a summary and major features of tuberous sclerosis.
http://www.nlm.nih.gov/cgi/jablonski/syndrome_cgi?term=tuberous+sclerosis&field=name
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Kolten's Tuberous Sclerosis Page
Kolten's story about living with this disease. The daily seizures that took over his life and the
amazing surgery that gave it back to him.
http://www.Kolten.homestead.com/Kolten.html
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Tuberous Sclerosis
A short information sheet on this disease compiled by NINDS, the National Institute of Neurological
Disorders and Stroke.
http://www.ninds.nih.gov/health_and_medical/disorders/tuberous_sclerosis.htm
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Tuberous Sclerosis Hub
A brief definition of, followed by links to overviews, research articles, case reports and images.
http://www.healthubs.com/tuberous
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TSCTalk
Mailing list and discussion boards for patients and professionals.
http://www.tsctalk.com
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Children's Hospital Medical Center of Cincinnati Tuberous Sclerosis Program
Organized in 1993 to assist in the medical care of children and adults with tuberous sclerosis.
http://www.cincinnatichildrens.org/Programs_Services/229/index.asp
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Tuberous Sclerosis - Lisa's Site
An incurable genetic condition that causes tumors to grow in various places in the body.
http://www.title14.com/ts/
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Tuberous Sclerosis Association
UK charity supporting sufferers, promoting awareness, and seeking the causes and best possible
management of this genetic disease. Resources for patient families and information on this
condition.
http://www.tuberous-sclerosis.org/
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