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This condition is not a rare disease. It is a condition about which the GARD
Information Center has received a question.
Tourette syndrome
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The
links on this page may take you to sites outside of the NIH. (See Disclaimer for details.)
Tourette syndrome is a disorder of the nervous system that causes a person to make repeated and uncontrolled (involuntary) movements and sounds (vocalizations) called tics. Tourette syndrome is named for Georges Gilles de la Tourette, who first described this disorder in 1885. There is strong evidence that Tourette syndrome is passed down through families, although the gene has not yet been found. The syndrome may be linked to problems in certain areas of the brain, and the chemical substances (dopamine, serotonin, and norepinephrine) that help nerve cells talk to one another. Tourette syndrome can be either severe or mild. It is estimated that about 1% of the population has Tourette syndrome.[3] Many people with very mild tics may not be aware of them and never seek medical help. Tourette syndrome is four times as likely to occur in boys as in girls.[1] Although Tourette syndrome can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.[2]
For more information about
Tourette syndrome
click on the boxes below:
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General | Management Guidelines
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More Detailed Information (Found 8 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates.
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General
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Genetics Home Reference (GHR) contains information on Tourette syndrome. Click on the link to go to GHR and review the information.
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MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information.
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Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free.
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The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
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The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
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The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Tourette syndrome. Click on the link to go to OMIM and review these resources.
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PubMed is a searchable database of medical literature and lists journal articles that discuss Tourette syndrome. Click on the link to view a sample search on this topic.
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Management Guidelines
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GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.
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Disease-Specific Organizations | Umbrella Organizations | Social Networking Websites
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Organizations (Found 11 resources)
Groups providing a wide range of services, supportive resources, and information.
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Disease-Specific Organizations
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The Movement Disorder Society International Secretariat
555 East Wells Street, Suite 1100 Milwaukee, WI 53202-3823 United States Telephone: 414-276-2145 Fax: 414-276-3346 E-mail: info@movementdisorders.org Web site: http://www.movementdisorders.org/
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Associacion Sindrome de Tourette de Peru
Luisa Fernanda L. de Romana, Gen. Sec. Las Golondrinas #390 Lima 27, PeruFax: + 51-1-224-7567
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Tourette Syndrome Foundation of Canada
#206, 194 Jarvis Street Toronto, Ontario Canada M5B 2B7 Toll Free: 1-800-361-3120 Phone: (416) 861-8398 Fax: (416) 861-2472 Email: tsfc@tourette.ca Web: http://www.tourette.ca/ Email:
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WE MOVE (Worldwide Education & Awareness for Movement Disorders)
5731 Mosholu Avenue Bronx, NY 10471 E-mail: wemove@wemove.org Web site: http://www.wemove.org/
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Tourette Syndrome Association
42-40 Bell Boulevard Suite 205 Bayside, NY 11361-2820 Toll-free: 888-4-TOURET (486-8738) Phone: 718-224-2999 Fax: 718-279-9596 Email: ts@tsa-usa.org Web: http://tsa-usa.org
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Umbrella Organizations
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Genetic Alliance
4301 Connecticut Avenue NW Suite 404 Washington, DC 20008-2369 Telephone: 202-966-5557 Fax: 202-966-8553 E-mail: info@geneticalliance.org Web site: http://www.geneticalliance.org
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National Organization for Rare Disorders (NORD)
55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 Toll-free: 1-800-999-6673 (voicemail only) Telephone: 203-744-0100 TTY: 203-797-9590 Fax: 203-798-2291 E-mail: orphan@rarediseases.org Web site: http://www.rarediseases.org/
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Social Networking Websites
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DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
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Madisons Foundation
P.O. Box 241956 Los Angeles, CA 90024 Telephone: 310-264-0826 Fax: 310-264-4766 E-mail: getinfo@madisonsfoundation.org Web site: http://www.madisonsfoundation.org/
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The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
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RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
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Testing | Genetic Services | Parent Resources
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Services (Found 4 resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories.
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Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
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Testing
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GeneTests lists laboratories offering clinical genetic testing for this condition. Clinical genetic tests are ordered to help diagnose a person or family and to aid in decisions regarding medical care or reproductive issues. Talk to your health care provider or a genetic professional to learn more about your testing options.
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Genetic Services
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You may wish to discuss your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
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Parent Resources
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The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.
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Clinical Trials & Research (Found 3 resources)
Resources where you may find research studies and clinical trials.
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ClinicalTrials.gov lists trials that are studying or have studied Tourette syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
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NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
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Patient Registry
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ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
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