1. Tuberous Sclerosis Association, UK "Supporting sufferers, promoting awareness, and seeking the causes and best possible management Category Health Conditions and Diseases tuberous sclerosis......The tuberous sclerosis Association, UK Supporting sufferers, promoting awareness,and seeking the causes and best possible management of tuberous sclerosis. http://www.tuberous-sclerosis.org/

The Tuberous Sclerosis Association TSA information: Home About the TSA Research Appeals ... Publications Search Zones: People with TSC Parents Doctors Carers ... Discussions NEW! About this site The top row of the menu bar takes you to useful information about the TSA and the services it provides. The bottom row allows you to examine resources tailored to your needs. Welcome Welcome to the Web site of the Tuberous Sclerosis Association, the UK charity that supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis (TSC). Training day, 23 May 2003, London The TSA's next training day for parents, carers and people with TSC is entitled Neurological Aspects of Tuberous Sclerosis and will be held on 23 May 2003 in London. BBC Lifeline Appeal The BBC have confirmed transmission details of the BBC TV national Lifeline Appeal as: Sunday 13 April - BBC 1 at approx 5pm and Wed 16 April - BBC 2 at approx 1pm. Find out more about the TSA by watching! Questions about Tuberous Sclerosis? The TSA has relaunched its discussion forums on this Web site. Discuss day-to-day issues

2. 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/

Site Directory Tuberous Sclerosis Links My Family Story My Laser Surgery Experience Photo Album ... Lisa and Pat got married!! What is Tuberous Sclerosis? Tuberous Sclerosis is a genetic disorder that causes benign tumors on various organs, including the brain, kidneys, heart, skin and lungs. Seizures also occur in some people with TSC, as does mental retardation. Tuberous Sclerosis And My Family There is a very strong occurance of Tuberous Sclerosis (TSC) in my family. You can read about how my family is affected here. Update 5/7/97 with story of my kidney tumor bleed Update 11/19/99 with cluster seizure story Update 12/8/99 with cluster seizure story - Part 2 Update 7/29/00 with Jen's graduation/trasition to 'real life' Update 7/16/02 with boring everyday stuff :-) Update 10/17/02 with seizure report for Lisa View my CT scans here! This page may take a couple of minutes to load. View my Renal Ultrasound A Word Of Thanks I would like to say thank you for all the wonderful messages you all have sent me over the years! I read each and every one and sometimes get teary-eyed reading them... but I love them all. I'm so happy to be able to make a difference in some of your lives... you have done the same for me just by writing. Thank you! Photo Album and Laser Surgery Page Our photo album - Come see Jen, Pat, Aura, Jas, Dutchess, the cats, and...me!

3. NINDS Tuberous Sclerosis Information Page A short information sheet on this disease compiled by NINDS, the National Institute of Neurological Category Health Conditions and Diseases tuberous sclerosis......tuberous sclerosis information sheet compiled by the National Institute ofNeurological Disorders and Stroke (NINDS). More about tuberous sclerosis, http://www.ninds.nih.gov/health_and_medical/disorders/tuberous_sclerosis.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about Tuberous Sclerosis Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS Tuberous Sclerosis Information Page Reviewed 07-01-2001 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Tuberous Sclerosis? Is there any treatment? What is the prognosis? What research is being done? ... Additional resources from MEDLINEplus What is Tuberous Sclerosis? Tuberous sclerosis is a rare genetic, neurological disorder primarily characterized by seizures, mental retardation, and skin and eye lesions. In some cases, neurobehavioral problems may also occur. Individuals with tuberous sclerosis may experience none or all of the symptoms with varying degrees of severity. Tuberous sclerosis is a multi-system disease that can affect the brain, kidneys, heart, eyes, lungs, and other organs. Small benign tumors may grow on the face and eyes, as well as in the brain, kidneys, and other organs. Neuroimaging studies may be able to confirm the diagnosis. Seizures most often begin in the first year of life. Is there any treatment?

4. Tuberous Sclerosis Alliance Nonprofit organization provides information, resources, and support for those with tuberous sclerosis and their families. to serving individuals and families affected by tuberous sclerosis complex. Although we have a new name, image, http://www.tsalliance.org/

SEARCH SITE: Welcome and thank you for visiting the Tuberous Sclerosis Alliance (TS Alliance), a national voluntary health organization dedicated to finding a cure for the many aspects of tuberous sclerosis complex (TSC). Take a tour of our site and learn more about this genetic disorder and how you can help! Become an advocate for increased federal support for TSC research! Click here for details. GIVING Join volunteers across the country by taking part in a national letter-writing campaign during Tuberous Sclerosis Awareness Month in May. Click here for more information! Interested in organizing or participating in a walk for the TS Alliance? Out Get involved TODAY! Click here to register with the TS Alliance Website! Registration takes only a moment and will allow you to track your donations, sign up for electronic updates on TSC research and participate in a variety of TS Alliance activities. Join in our first national Outreach and Awareness Campaign Click here to help!

5. Tuberous Sclerosis And Related Sites Lisa's Long List of tuberous sclerosis and Related Websites http://www.title14.com/ts/tssites.html

Tuberous Sclerosis and Related Links Here is my list of sites on Tuberous Sclerosis. This used to be a very small page due to the lack of information about Tuberous Sclerosis available on the net back in 1995, when this site was created. Things have changed.. I am so happy to see that information about Tuberous Sclerosis is becoming easier to find. If you have a suggestion for a new catagory or site, or if you find that any of these links are not working, please send me E-mail at latrainor@title14.com and let me know. Thanks! Table of Contents Tuberous Sclerosis Links My CT Scan/Ultrasound Epilepsy/Neurology Links Autism ... Home Tuberous Sclerosis Links Australasian Tuberous Sclerosis Society Center For Medical Genetics Christopher - ts page dedicated to Christoper Disease: Tuberous Sclerosis - Bourneville's Disease GeneClinics : Tuberous Sclerosis Complex Genome Maps 7 - Chromosome 9 Keith Hall's Tuberous Sclerosis Story Melissa's Page National Institute of Health Consensus Conference : Tuberous Sclerosis Complex NCGR -Genetics and Public Issues OMIM Home Page Online Mendelian Inheritance in Man OMIM Entry 191100 Scott's TS Page Swedish TS association Treasure Street ... Tuberous Sclerosis -Definition Tuberous Sclerosis Tuberous Sclerosis - Florida Medical Network Tuberous Sclerosis Alliance Tuberous Sclerosis Association (UK) Tuberous Sclerosis Program Overview - Children's Hospital Medical Center of Cincinnati The Wonder of Aubrey - personal website My CT Scan and Ultrasound My CT scan

6. MEDLINEplus: Tuberous Sclerosis FAQ's about tuberous sclerosis Complex (tuberous sclerosis Alliance) http://www.nlm.nih.gov/medlineplus/tuberoussclerosis.html

Skip navigation Other health topics: A B C D ... List of All Topics Tuberous Sclerosis Contents of this page: From the NIH General/Overviews Coping Diagnosis/Symptoms ... Teenagers Search MEDLINE for recent research articles on Tuberous Sclerosis You may also be interested in these MEDLINEplus related pages: Brain and Nervous System Genetics/Birth Defects From the National Institutes of Health Tuberous Sclerosis (National Institute of Neurological Disorders and Stroke) Tuberous Sclerosis (National Center for Biotechnology Information) Tuberous Sclerosis Information Page (National Institute of Neurological Disorders and Stroke) General/Overviews FAQ's about Tuberous Sclerosis Complex (Tuberous Sclerosis Alliance) Clinical Trials ClinicalTrials.gov: Tuberous Sclerosis (National Institutes of Health) Coping Living With Tuberous Sclerosis Complex (Tuberous Sclerosis Alliance) Diagnosis/Symptoms Diagnostic and Surveillance Screening in TSC (Tuberous Sclerosis Alliance) Neuroimaging in Tuberous Sclerosis Complex (Tuberous Sclerosis Alliance) Disease Management Making the Most of Your Doctors Visits (Tuberous Sclerosis Alliance) Research Genetics of Tuberous Sclerosis (TS) (Tuberous Sclerosis Alliance) Updates in Tuberous Sclerosis Research (Tuberous Sclerosis Alliance) Specific Conditions/Aspects Brain Involvement (Tuberous Sclerosis Alliance) Epilepsy/Seizure Disorders (Tuberous Sclerosis Alliance) Eye Involvement (Tuberous Sclerosis Alliance) Facts for Teachers (Tuberous Sclerosis Alliance) Heart Involvement (Tuberous Sclerosis Alliance)

7. Tuberous Sclerosis Fact Sheet Developed by the National Institute of Neurological Disorders and Stroke (NINDS).Category Health Conditions and Diseases tuberous sclerosis......tuberous sclerosis fact sheet developed by the National Institute of NeurologicalDisorders and Stroke (NINDS). What is tuberous sclerosis? http://www.ninds.nih.gov/health_and_medical/pubs/tuberous_sclerosis.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about a disorder Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health Tuberous Sclerosis Fact Sheet Get Web page suited for printing Email this to a friend or colleague Request free mailed brochure Table of Contents What is Tuberous Sclerosis? What causes TSC? Is TSC inherited? What are the signs and symptoms of TSC? ... Where can I get more information? What is Tuberous Sclerosis? Tuberous sclerosis-also called tuberous sclerosis complex (TSC) - is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It commonly affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease. The disorder affects as many as 25,000 to 40,000 individuals in the United States and about 1 to 2 million individuals worldwide, with an estimated prevalence of one in 6,000 newborns. TSC occurs in all races and ethnic groups, and in both genders.

8. Tuberous Sclerosis / The Family Village tuberous sclerosis. Synonyms Epiloia or Bourneville's disease http://www.familyvillage.wisc.edu/lib_tube.htm

Tuberous Sclerosis Synonyms: Epiloia or Bourneville's disease Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Tuberous Sclerosis" Who to Contact Tuberous Sclerosis Alliance (formerly the National Tuberous Sclerosis Association) 801 Roeder Road, Suite 750 Silver Spring, MD 20910 301-562-9870 (fax) E-mail: info@tsalliance.org Web: http://www.tsalliance.org/ Where to Go to Chat with Others TSCTALK This list is dedicated to supporting people with TS, their families and friends. To subscribe send an e-mail message to: tsctalk-requests@pebbs.com In the subject line of the message type: subscribe Tuberous Sclerosis Alliance Online Communities Learn More About It What is tuberous sclerosis complex? Tuberous Sclerosis information NINDS Tuberous Sclerosis Information Page Tuberous Sclerosis 1 - information from OMIM ... Tuberous Sclerosis 4 - information from Ped Base Web Sites Tuberous Sclerosis Alliance (formerly the National Tuberous Sclerosis Association) Tuberous Sclerosis International Tuberous Sclerosis Association of Great Britain Ethan's Tuberous Sclerosis Page Back to [ S - T Family Village Home Library Coffee Shop ... Information Last Updated 11/7/01 by familyvillage@waisman.wisc.edu

9. TOUS: CAS TUBEROUS SCLEROSIS Les dossiers classés en "tuberous sclerosis". ANGIOMYOLIPOMA CT tuberous sclerosis ANGIOMYOLIPOMA http://www.med.univ-rennes1.fr/cerf/iconocerf/idx/tous/TUBEROUS_SCLEROSIS.html

ANGIOMYOLIPOMA : CT,TUBEROUS SCLEROSIS,ANGIOMYOLIPOMA BRAIN : BRAIN, CT,TUBEROUS SCLEROSIS CT : BRAIN, CT,TUBEROUS SCLEROSIS CT,TUBEROUS SCLEROSIS,ANGIOMYOLIPOMA Total: 2 cas cliniques Sommaire des Index de Radiologie

10. Pediatric Oncall- TUBEROUS SCLEROSIS Offers commonly asked questions about this disease. http://www.pediatriconcall.com/forpatients/CommonChild/tuberous_sclerosis.asp

Pediatricians Group Discussion Specialist Answers Share experience ... Doctors Corner TUBEROUS SCLEROSIS Q1). What is tuberous sclerosis? EVERY INDIVIDUAL WITH TUBEROUS SCLEROSIS IS AFFECTED DIFFERENTLY. SOME INDIVIDUALS ARE TOTALLY UNAFFECTED WHEREAS SOME PEOPLE ARE MORE SEVERELY AFFECTED. Q2). How common is tuberous sclerosis? A 2). Out of every 6000 newborns, one may have tuberous sclerosis. More than 1 million people around the world are known to have tuberous sclerosis. These may still be many undiagnosed cases and mild forms of the disease. Q3). How does a person with tuberous sclerosis present? The disease spectrum of tuberous sclerosis is very diverse. Some may present with a very severe form whereas some may be totally unaffected. Tuberous sclerosis primarily affects the brain, skin, eyes, kidneys, heart and bones.

11. Overview, Cincinnati Childrens Hospital Medical Center 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

Services / Programs Contact Us Faculty and Staff Overview Patient Expectations Patient Referrals Tuberous Sclerosis Program Overview The Tuberous Sclerosis Clinic at Children's Hospital Medical Center of Cincinnati was organized in 1993 to assist in the medical care of children and adults who have or are suspected of having Tuberous Sclerosis. The purpose of the Tuberous Sclerosis clinic is not to replace care from the child's pediatrician or family physician, but to assist the primary care doctor in dealing with those aspects of Tuberous Sclerosis that affect the child's health or development. The basis of the Tuberous Sclerosis Clinic is the realization that people with Tuberous Sclerosis are different from other individuals who have epilepsy, learning disabilities, behavior problems, etc. For too long the unique problems found in this disease have been lumped together with similar disorders in children without tuberous sclerosis. Yet, research has increasingly shown that disorders of the brain, learning, heart, kidney, and other organs in Tuberous Sclerosis are different than the same conditions in individuals without Tuberous Sclerosis. The Tuberous Sclerosis Clinic is managed by the Neurology Department at Children's Hospital Medical Center of Cincinnati, and is part of the University of Cincinnati Medical Center.

12. Tuberous Sclerosis Hub A brief definition of, followed by links to overviews, research articles, case reports and images. http://www.healthubs.com/tuberous

Tuberous sclerosis is an hereditary disorder characterized by seizures, mental retardation, and skin and eye lesions. It is a multi-system disease that can affect the brain, kidneys, heart, eyes, lungs, and other organs. Small benign tumors may grow on the face and eyes, as well as in the brain, kidneys, and other organs. Neuroimaging studies may be able to confirm the diagnosis. Seizures most often begin in the first year of life. Acne Allergy Antibiotics Antioxidants ... NINDS Tuberous Sclerosis Information Page - by The National Institute of Neurological Disorders and Stroke, National Institutes of Health. Recognizing an Index Case of Tuberous Sclerosis - by Joseph S. Hurst, M.D., Susan Wilcoski, M.D. Tuberous Sclerosis by Alicia Zukas Tuberous Sclerosis, Lymphangiomyomatosis, and Polycystic Kidney Disease - from Fox Chase Cancer Center. Tuberous Sclerosis Complex - by Cheryl Howell, Kenyon College. Cutaneous Tumorigenesis in Patients with Tuberous Sclerosis Tuberous Sclerosis - Bourneville's Disease - by Jeff Goree, M.D. Tuberous Sclerosis Complex (TSC) - by the Center for Human Genetics - Duke University Medical Center.

13. Tuberous Sclerosis Canada Sclérose Tubéreuse Site includes contact email 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

Beauty Tips By Audrey Hepburn For attractive lips, Speak words of kindness For lovely eyes, Seek out the good in people. For a slim figure, Share your food with the hungry. For beautiful hair, Let a child run his fingers through it once a day. For poise, Walk with the knowledge you'll never walk alone. People, even more than things have to be restored, renewed, Revived, reclaimed and redeemed. Never throw out anybody. Remember: if you ever need a helping hand, you'll find one at the end of your arm. As you grow older you will discover that you have two hands. One for helping yourself, the other for helping others. charitable registration: Tuberous Sclerosis Canada Dedicated to the principles of providing encouragement and support to individuals and their families diagnosed with Tuberous Sclerosis Complex (TSC); raising public awareness and educating our communities of TSC; and to promote and support research aimed at the cure for TSC and/or control of Tuberous Sclerosis symptoms.

14. 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

Pediatric Database (PEDBASE) Discipline: CNS Last Updated: 5/28/94 TUBEROUS SCLEROSIS DEFINITION: A neurocutaneous syndrome characterized by cutaneous and neurologic manifestations (mental retardation and seizures), and tumors. EPIDEMIOLOGY: incidence: 1/6,000 age of onset: 1st decade risk factors: familial - autosomal dominant with variable penetrance de novo mutations chrom.#: 9q33-34 chrom.#: 16p13 if 2 or more siblings with Tuberous Sclerosis (TS) then one parent always has at least one skin manifestation of TS sporadic rate varies from 58-77% if both parents are normal the TS in a child is probably a new mutation HISTORY: 1880-1900 - Bourneville and Brissaud first pathologic description of TS first to call the disease tuberous sclerosis first to relate cerebral sclerosis to the renal tumors 1908 - Vogt emphasized cardiac and renal tumors are constituents of TS triad: mental retardation (MR), seizures, adenoma sebaceum PATHOLOGY: 1. Tubers basic cause is unknown but considered a disorder of early embryogenesis greater the # of tubers the greater the neurologic impairment found anywhere within the cerebral hemispheres: typically present in the subependymal region (located in the walls of the lateral ventricles and on the surface of the basal ganglia) and may extend into the ventricles also cortical gyri, sulcus terminalis

15. Marian's Life With Tuberous Sclerosis Marian's story. Information about the disease, pictures, contacts, medicine, links. http://www.expatworld.de/marian

Marian's story. A boy who suffers from Tuberous Sclerosis. Informations about the disease, pictures, contacts, medicine, links and some more. TS, TSC, Tuberöse, Sklerose, krank, Newsgroup, Diskussionsforum, herzkrank, Herztumore, Rhabdomyome, Kinder, Kardiologie, Kinderkardiologie, Herz, Tumor, Aortenbogenhypoplasie, Prostaglandin, Therapie, Herzkatheter, Echokardiographie, Krampfanfall, Epilepsie, Aortenbogenhypoplasie, Aortenisthmusstenose, pulmonale, Hypertension, Herzoperation, Depigmentierungen, Sabril, antikonvulsiv, Anfallsleiden, Anastomose, Patcherweiterungsplastik, Aorta, Luminal, Phenobarbital, ill, sick, cardiologic, heart, cardiac, defect, suffer, spasm, convulsion, cramp, tuberous, Tuberous, Sclerosis, sclerosis, autism, Genetic, Seizure, Seizures, Epilepsy, Health, Disease, Rare, Disorders, Genetics, Conditions, tubular Text and idea by TReiske@uni-muenster.de Last update: 20. 10. 2002

16. The Rothberg Institute - Home The Rothberg Insitute is a nonprofit organization dedicated to finding a cure for tuberous sclerosis Complex http://www.childhooddiseases.org

About TRI Overview News Press Staff Contact ... Legal Overview The Rothberg Institute For Childhood Diseases is a non-profit organization dedicated to finding a cure for children suffering from Tuberous Sclerosis Complex (TSC). We operate at the intersection of modern biology, computer science, and chemistry. The work we do on TSC will also have a direct impact on cancer research, and we will be testing the drugs we find as weapons against cancer. In addition the work we do to create a system to attack orphan diseases will form a prototype for work on other orphan diseases and diseases that affect the third world. TSC is a genetic disorder that leads to benign tumors in multiple organs, including the brain, kidneys, heart, eyes, lungs and other organs. During the first few years, the severity of TSC can range from mild skin abnormalities to, in severe cases, seizures, mental retardation or renal failure. For more information about TSC please visit www.tsalliance.org

17. What Is Tuberous Sclerosis? National tuberous sclerosis web site, for valuable information and supportfor those affected by tsc. WHAT IS tuberous sclerosis COMPLEX? http://www.tsalliance.org/WhatIsTSC/

SEARCH SITE: WHAT IS TUBEROUS SCLEROSIS COMPLEX? Tuberous sclerosis complex (TSC) is a genetic disorder that causes benign tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis from Tourette's syndrome. The true prevalence of TSC is unknown, but its incidence has recently been estimated to be 1 in 6,000 live births. This means approximately 50,000 individuals in the United States and more than 1 million worldwide have TSC. It occurs in both sexes and in all races and ethnic groups. Frequently Asked Questions (FAQ's) Genetics of TSC Clinical Manifestations of TSC Diagnostic Criteria 801 Roeder Road, Suite 750, Silver Spring, MD 20910 Phone: (800) 225-6872 Fax: (301) 562-9870

18. Team Ninja This is the home of Team Ninja, a team that pursues distributed computing projects. We currently work on Distributed Folding tuberous sclerosis Complex (TSC) http://www.team-ninja.com

Distributed Folding Seti@Home The Next Generation Genome@Home Mathematical Projects RC5-72 and OGR-25 Scientific Research TSC, Sengent, Evolution@Home, Ubero Team Support Forum Team Support Forum Team Support Forum Team Support Forum ... KDFold Domain and hosting courtesy of: Meadmaker L10 Hit Counter by LevelTen Web Design

19. Tuberous Sclerosis Alliance tuberous sclerosis Alliance. A new name, a new logo and a new Web site.For more than 25 years, NTSA has been the only national organization http://www.ntsa.org/

A new name, a new logo and a new Web site. For more than 25 years, NTSA has been the only national organization dedicated to serving individuals and families affected by tuberous sclerosis complex. Although we have a new name, image, address and Web site, we remain true to our mission of finding a cure for tuberous sclerosis complex while improving the lives of those affected. Please bookmark our new Web address: www.tsalliance.org

20. Cell Biology And Cytoskeleton Group The Cell Biology and Cytoskeleton Group of the Division of Hematology at the Brigham and Women's Hospital and Harvard Medical School (Stossel, Hartwig and Kwiatkowski Labs) focuses mainly on the structure, function and regulation of the cytoskeleton and related areas in cell biology actin dynamics, cell motility and mechanics, cytoskeletal polymer physics and rheology, interactions between different cytoskeletal polymer systems, phosphoinositides and signaling to the cytoskeleton. In addition, the Group has an active program of research on tuberous sclerosis. http://zk.bwh.harvard.edu

Research Overview People Recent Alumni Lab Meetings ... Useful Links Cell Biology and Cytoskeleton Group (Formerly Division of Experimental Medicine) Division of Hematology, Brigham and Women's Hospital Department of Medicine, Harvard Medical School Site Map Longwood Area

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