1. Tuberous Sclerosis Association, UK 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/

The Tuberous Sclerosis Association TSA information: Home About the TSA Research Appeals ... Publications Search Zones: People with TSC Parents Doctors Carers ... Discussions 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. Don't forget to register for occasional updates and news from the TSA. 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). International Research Conference The TSA is hosting a conference on "TSC genes" in September 2004 in Cambridge, UK. The full programme and booking form are available online. New publications online The TSA's 2003 Annual Report, our February 2004 newsletter, and a new fact sheet on Person Centred Planning are available for download from our publications page. Questions about Tuberous Sclerosis? The TSA has relaunched its discussion forums on this Web site. Discuss day-to-day issues

2. Tuberous Sclerosis Alliance National tuberous sclerosis web site, for valuable information and support for those affected by tsc. Click here to help STAMP OUT tuberous sclerosis! 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! Comedy for a Cure Featured in US Weekly Magazine Picture Click here to see the picture. Additional Research Funding for TSC Find out how you can help East Coast TSC Conference Presentations and Audiotapes Now Available Click here to download the presentations. Click here for a listing of available tapes. Click here for a printable tape order form. Get Involved TODAY! Click here to help STAMP OUT tuberous sclerosis! TS Alliance announces regional conferences Clic k here for more information and to register.

3. NINDS Tuberous Sclerosis Information Page tuberous sclerosis information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). What is tuberous sclerosis? Is there any treatment What is tuberous sclerosis? tuberous sclerosis is a rare genetic, neurological disorder primarily characterized by 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 Fact Sheet tuberous sclerosis fact sheet developed by the National Institute of Neurological Disorders and Stroke (NINDS). What is tuberous sclerosis? What causes TSC What is tuberous sclerosis? tuberous sclerosisalso called tuberous sclerosis complex (TSC)1 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.

5. Tuberous Sclerosis Alliance to serving individuals and families affected by tuberous sclerosis complex. Although we have a new name of finding a cure for tuberous sclerosis complex while improving the lives 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

6. 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!

7. 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

8. Tuberous Sclerosis tuberous sclerosis information, links lay advocacy groups and genetic support groups tuberous sclerosis. tuberous sclerosis Alliance( National tuberous sclerosis Association prior to Massachusetts General Hospital. tuberous sclerosis, National Institute of Neurological http://www.kumc.edu/gec/support/tuberous.html

Tuberous sclerosis Tuberous Sclerosis Alliance (National Tuberous Sclerosis Association prior to Dec 2000)) 801 Roeder Road, Suite 750 Silver Springs, MD 20910 Phone: (800) 225-6872 E-mail: ntsa@ntsa.org Web Site: www.tsalliance.org Links to related web sites Clinical Manifestations Fact Sheet for Teachers: Tuberous Sclerosis Seizure First aid: what do do when someone has a seizure Tuberous Sclerosis Canada Sclerose Tubereuse 2443 New Wood Drive Oakville, ON L6H 5Y3 CANADA International Organizations Tuberous Sclerosis Association (TSA), United Kingdom Tuberous Sclerosis International (TSI) Swedish Tuberous Sclerosis Association Australasian Tuberous Sclerosis Society Israel Association Of Rare Diseases (Eitan) New Zealand Tuberous Sclerosis Support Group Also See: National organizations regarding genetic conditions or birth defects Brain Tumor Resource Guide , Massachusetts General Hospita l Tuberous Sclerosis , National Institute of Neurological Disorders and Stroke Tuberous Sclerosis , radiology, University of Iowa Tuberous Sclerosis , french Epilepsy Foundation of America American Epilepsy Society Autism Society of America National Attention Deficit Disorder Association ... American Academy of Dermatologists To locate a genetic counselor or clinical geneticist: Professional Genetics Societies Genetic clinics, centers, departments

9. Tuberous Sclerosis / The Family Village 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 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

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

PARENT CORNER Search GO Home Back Search for Pediatricians Hospitals Special Schools Baby Names Holistic Medicines Alternative Medicine Home Made Remedies Guest Book Guest Book Discussion Boards Share Experience Post Query ... Specialist Answers 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.

11. 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.

12. 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

13. NORD - National Organization For Rare Disorders, Inc. Offers alternative names, a general discussion and further resources. http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Tuberous Scle

14. Tuberous Sclerosis Alliance National tuberous sclerosis web site, for valuable information and support for those affected by tsc. http://www.tsalliance.org/Default1.asp

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! LEGISLATIVE ALERT: CONTACT YOUR SENATOR TODAY Help Ensure $4 Million For TSC Research For Details Click Here New Drug Discovery Program on TSC! The Rothberg Institute for Childhood Diseases has initiated scientific research to find medicines to treat and cure aspects of TSC. This drug discovery process is aided by research initiated by the Tuberous Sclerosis Alliance, resulting in the identification of molecular targets that can now be tested with known chemical compounds from a virtual library of more than 2 million compounds. Read more about it!

15. ^i^ Christopher Scott Golden ^i^ Christopher was born and passed away on September 7, 1993, due to tuberous sclerosis. http://www.geocities.com/Heartland/Woods/3102/christopher.html

^i^ Christopher Scott Golden ^i^ Christopher was born/died September 7,1993. I didn't know it was possible to be so happy and sad in the same day. Doing this page about him has helped tremendously in the healing process. It has been almost 7 years and at times can still seem like yesterday. You can learn more about Tuberous Sclerosis here at NTSA (the NTSA website is currently down no word yet on when it will be back up) His Story~ Memorial Pictures Our Family Guest book Bradley Nicholas ^i^ Christopher James ... Graphics coming soon ? Photos @ Yahoo! coming soon ? Moms with all boys Yahoo! CLUBS Close Sibs This Empty Arms Ring site is owned by Jennifer Click for the [ Previous Random NextSite Skip Next Click here for info on how to join Empty Arms Ring Artwork by Cia. Angel Baby Background from: Backgrounds by Marie

16. Team Ninja - DC With A Twist 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

Jun-02-2004 Main Menu Home Articles Reviews News ... Web Links Login Form Username Password Forgotten your password No account yet? Create one Whos Online Fireblade Hogward Jules Current Topics A new owner Happy Birthday Spec!!... DF Commentary for Wed... Barbo ... It's Murphy's Law.... Linksys routers may be open to remote sniffing Written by Terminator Wednesday, 02 June 2004 Folks at security portal SecuriTeam published on May 17 an exploit that could allow hackers and other nasty people to remotely sniff traffic passing through the router, and also crash the device. Last Updated ( Wednesday, 02 June 2004 ) Read more... Microsoft hit by record EU fine Written by Terminator Wednesday, 24 March 2004 Software giant Microsoft must pay a fine of 497m euros ($613m; £331m) for abusing its dominant market position, the European Commission has ordered. Read more... War of Worms turns into War of Words Written by Terminator Wednesday, 03 March 2004 The unknown authors of the Netsky and Bagle worms are battling in cyberspace for control of vulnerable Windows PCs. Maybe. New versions of the Bagle worm (e.g.

17. The Sweetest Sound The Miracle Of Taylor Hess The Hess family must come to grips with the reality that their daughter has tuberous sclerosis. http://www.taylorsmiracle.com

About Taylor's Family Photo Gallery How to order the book Online Resources ... The Sweetest Sound: The Miracle of Taylor Hess Taylor Hess at 18 months Sheryl Hess’s, The Sweetest Sound: The Miracle of Taylor Hess, is the inspiring account of the Hess family coming to grips with the reality that their beloved infant daughter has Tuberous Sclerosis. The story begins with Dave and Sheryl Hess hearing the diagnosis from physicians that their precious baby, Taylor, may never walk, talk, or have much function at all. After the initial shock wears off, the Hesses set out to dispel this declaration armed with early intervention therapies, medicines, and most of all, love. Sheryl sets up "Taylor Command Central" where she bombards Taylor with physical therapy, occupational therapy, speech therapy, and developmental therapy. There is an army of people who come into Taylor’s life to help this little girl be her best. All are touched by Taylor’s sweet nature and motivation to succeed. SEARCH More Search options 1up! Software

18. Tuberous Sclerosis - Learn More From MedlinePlus Find the latest news stories, overviews, research and more on tuberous sclerosis from MedlinePlus, the National Library of Medicine's consumer health site. http://rdre1.inktomi.com/click?u=http://www.nlm.nih.gov/medlineplus/tuberousscle

19. 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 Press Orphan Disease Proposal Drug Innovation 2000 Staff ... Legal View of Town Marina from The Rothberg Institute ( click for cam The Rothberg Award for Courage in Research is now sponsoring work at: 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. 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

20. Overview, Cincinnati Children's 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

Home Contact Us Site Map Go to Advanced Search ... Tuberous Sclerosis Program Overview Patient Referrals Patient Expectations Contact Us Faculty and Staff Tuberous Sclerosis Program Overview The Tuberous Sclerosis Clinic at Children's Hospital Medical Center of Cincinnati, the largest in the United States, 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.

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