21. Treacher Collins treacher collins syndrome. Personal Web Pages treacher collins syndrome APersonal View, V OliverMacklin, tcs.london@virgin.net London, England; http://www.kumc.edu/gec/support/treacher.html

Treacher Collins Syndrome Treacher Collins Foundation P.O. Box 683 Norwich, VT 05055-0683 Phone: 802-649-3050 or 1-800-TCF-2055 Executive Director: Hope Charkins, M.S.W. Web site: http://mcrcr2.med.nyu.edu/murphp01/tcollins.htm The Treacher Collins Family Support Group 114 Vincent Road Thorpe Hamlet, Norwich Norfolk NR1 4HH, ENGLAND E-mail: 100674.1765@compuserve.com Web site: http://www.tcfsg.demon.co.uk/ The Treacher Collins Network Web site: http://www.geocities.com/Heartland/Plains/6153/ Personal Web Pages: Treacher Collins Syndrome: A Personal View V Oliver-Macklin, tcs.london@virgin.net London, England Tony`s Treacher Collins Page Welcome to Mirrored Images , CeCe Some Common Questions and Answers Concerning Treacher Collins Syndrome Amie's Home Also See: National organizations with information on genetic conditions or birth defects National Health Information Center Treacher Collins Syndrome The National Organization for Rare Disorders Craniofacial Conditions and Resources To locate a genetic counselor or clinical geneticist in your area: Professional Genetics Societies Genetic clinics, centers, departments

22. The DRM WebWatcher: Treacher Collins This section of The DRM WebWatcher describes onlineresources about treacher collins syndrome. http://www.disabilityresources.org/TREACHER.html

Home Subjects States Librarians ... Contact Us The DRM WebWatcher Treacher Collins Syndrome Updated 2/10/2001 A B C D ... About/Hint/Link Treacher Collins (mandibulofacial dysostosis) is a condition that causes abnormalities of the craniofacial area. Although we have not identified any comprehensive resources online, the following are some useful fact sheets and home pages. You may also wish to visit the related topics for more information. Treacher Collins Family Support Group This British support group provides basic informations about Treacher Collins, genetic information, bone conduction and bone anchored hearing aids, and related sites. Treacher Collins Foundation The website of "an organization of families, individuals, and professionals who are interested in developing and sharing knowledge and experience about Treacher Collins syndrome and related conditions." Includes information about the syndrome, a newsletter, bibliography, and other resources. Treacher Collins Network This personal home page by the parents of a child with Treacher Collins offers links to informational and personal home pages, and a bulletin board.

23. Health Library - Treacher Collins Syndrome treacher collins syndrome. Synonyms. Treacher CollinsFranceschetti Syndrome 1;Mandibulofacial Dysostosis; MFD1; TCOF1; Franceschetti-Zwalen-Klein Syndrome; TCS. http://health_info.nmh.org/Library/HealthGuide/IllnessConditions/topic.asp?hwid=

24. OneLook® Search Results: Treacher Collins Syndrome Religion, Science, Slang, Sports, Tech, Phrases We found 4 dictionaries with Englishdefinitions that include the word treacher collins syndrome Tip Click on http://www.onelook.com/?w=treacher collins syndrome

25. Characterization Of The Treacher Collins Syndrome Gene Characterization of the treacher collins syndrome Gene. Keywords. Craniofactal;treacher collins syndrome; Nucleolar phosphoptotein; Development; Mouse model. http://www.vipbg.vcu.edu/hg/grant/DE13172.shtml

D epartment of H uman G enetics Projects Characterization of the Treacher Collins Syndrome Gene National Institutes of Health Grant number Principal Investigator: Rita Shiang Co-investigators: Years: Abstract Keywords Craniofactal Treacher Collins syndrome Nucleolar phosphoptotein Development Mouse model information mission history relations contact ... highlights research facilities projects collaborations publications people faculty students staff directory ... jobs education seminars graduate courses graduate program Home Questions, comments, suggestions, problems? Contact the Webmaster Date last modified: August 27, 2001

26. In Vivo And In Vitro Models Of Treacher Collins Syndrome In vivo and in vitro models of treacher collins syndrome. Jeffress Craniofactal;treacher collins syndrome; Nucleolar phosphoptotein; Development; Mouse model. http://www.vipbg.vcu.edu/hg/grant/ShiangJ566.shtml

D epartment of H uman G enetics Projects In vivo and in vitro models of Treacher Collins Syndrome Jeffress Grant number Principal Investigator: Rita Shiang Co-investigators: Years: Abstract Keywords Craniofactal Treacher Collins syndrome Nucleolar phosphoptotein Development Mouse model information mission history relations contact ... highlights research facilities projects collaborations publications people faculty students staff directory ... jobs education seminars graduate courses graduate program Home Questions, comments, suggestions, problems? Contact the Webmaster Date last modified: August 27, 2001

27. Treacher Collins Syndrome treacher collins syndrome Mandibulofacial Dysostosis Special Resources SOSAsk experts or consultants for information treacher collins syndrome. http://ibis-birthdefects.org/start/tcsfact.htm

Tips for printing Treacher Collins Syndrome Mandibulofacial Dysostosis About I.B.I.S. Home Search Topics Search all contents ... "In the News" Messages... Questions/comments Report Dead Links S.O.S. - Exchange Join I.B.I.S. ... Etchings Please Explore: Deafness Cleft Palate Support Groups Professional Associations ... Key Information Sources Contents include Titles above and Acrofacial Dysostosis 1 Collins Treacher Franceschetti Dysostosis, Mandibulofacial Dysostosis, Nager Acrofacial Francheschetti Klein Francheschetti, Treacher Collins Klein Francheschetti Mandibulofacial Dysostosis Mandibulofacial Dysostosis with Limb Anomalies Nager Acrofacial Dysostosis TCS Treacher Collins Franceschetti "Treacle" Gene Special Resources Treacher Collins Syndrome A Selection of Internet Sites [*] Outstanding [P] For Professionals [S] Support Group [Dutch] [French] [German] [Spanish] [Swedish] [Ukrainian] [*] [P] Treacher Collins Franceschetti Syndrome 1 from OMIM Gene Map Locus: 5q32-q33.1 [*] [P] Acrofacial Dysostosis 1, Nager Type

28. Treacher Collins Syndrome - A Personal View Whilst searching on the internet for information about treacher collins syndromeI found very little nontechnical / clinical information, and even less http://freespace.virgin.net/tcs.london/

Updated: 18th August 2002 W hilst searching on the internet for information about Treacher Collins Syndrome I found very little non-technical / clinical information, and even less information from a personal point of view. Most sites I did find were of support groups and most were in the US. W hen I was born with TCS I expect my parents would have appreciated a little more information and advice. I don't think they got much support at all. In fact I think they were faced with many blank looks from people who weren't quite sure what to make of me! A s I have now started my own homepage I thought I would try to compile some information and gather some links that might be of use to people with TCS or their families. I hope it may also be used as a meeting point for those people (Until very recently I had never spoken to anyone with TCS), and also help those who are lucky enough to live without it understand a little more about it. It is amazing how most people are afraid to ask! I would appreciate it if you would sign the guestbook, which can be found in the utilities page, especially if you have TCS or have a family member with it. Please give me feedback on where you are from, how (if at all) you are connected with TCS, how useful you found the site and any suggestions for improvements. Also if you have any further information or links which could be added, please let me know. If you have a TCS related site of your own, please join the

29. Treacher Collins Syndrome - Web Links Has a new message board. treacher collins syndrome A personal web page A Personalsite by Amie in Texas who has TCS. Well presented and very readable. http://freespace.virgin.net/tcs.london/link.htm

The Treacher Collins Family Support Group (United Kingdom) Brief explanation of the aims of the support group. Contains information abut the syndrome and the genetics. Also has information on Bone Conduction and Bone Anchored hearing aids. Also a couple of links. Treacher Collins Foundation (United States and Canada) Brief explanation of TCS and information of the foundations services (was known as Treacher Colllins Family Support Network. Serves US and Canada.) This site is part of a much larger site RGDC dedicated to Rare Genetic Diseases in Children. Treacher Collins Network Good list of addresses under "info by mail" link. Other link pages appear to be missing. Has a new message board. Treacher Collins Syndrome - A personal web page A Personal site by Amie in Texas who has TCS. Well presented and very readable. She also has a great quotes page. Includes pictures! Some Common Questions and Answers Concerning Treacher Collins Syndrome Exactly what it says! Very clear and readable, written by Paul who has TCS. One page only. Ce Ce's homepage Another personal site - by CeCe in California who has TCS. Includes pictures, be sure to check out her Butterfly poem!

30. Health Library - Treacher Collins Syndrome treacher collins syndrome. Synonyms. Treacher CollinsFranceschetti Syndrome 1;Mandibulofacial Dysostosis; MFD1; TCOF1; Franceschetti-Zwalen-Klein Syndrome; TCS. http://www.laurushealth.com/library/healthguide/illnessconditions/topic.asp?hwid

31. Health Library - Treacher Collins Syndrome treacher collins syndrome. Founded 1988Support for families, individuals andprofessionals re treacher collins syndrome and related disorders. http://www.laurushealth.com/library/healthguide/selfhelp/topic.asp?hwid=shc29tre

32. Treacher Collins Syndrome -- Discovery Health -- Facial Malformations discoveryhealth.com, treacher collins syndrome treacher collins syndromeis a highly complex disease process. It is characterized http://health.discovery.com/stories/gift/treacher.html

Treacher Collins Syndrome Treacher Collins syndrome is a highly complex disease process. It is characterized by hypoplasia of the facial bones, especially the zygoma (cheekbone) and the mandible. Facial clefting causes this hypoplastic appearance, with possible deformities or deficiencies of the ear, orbital, midface, and lower jaw regions. The clinical appearance is a result of the cheekbone failing to fuse with the maxilla, frontal and temporal bones. An extensive array of complications can affect treatment. Because of the small jaw and airway, combined with the normal size of the tongue, breathing problems can occur at birth and during sleep for a child with Treacher Collins syndrome. Learning and speech difficulties can also occur depending on the degree of conductive hearing loss common in the syndrome. As with other disfiguring conditions, assessing and treating the psychological needs of the Treacher Collins patient is a vital function of the true craniofacial center. Source: Craniofacial Surgery, Larry A. Sargent, M.D. Tennessee Craniofacial Center. CONTENTS Oral Clefting Craniosynostosis Hemangiomas Microtia ... Gift of a Smile Explore the complex human body!

33. Health Library - Treacher Collins Syndrome treacher collins syndrome. Founded 1988Support for families, individuals andprofessionals re treacher collins syndrome and related disorders. http://yalenewhavenhealth.org/Library/HealthGuide/SelfHelp/topic.asp?hwid=shc29t

34. TREACHER COLLINS SYNDROME Pediatric Database (PEDBASE); Discipline GEN; Last Updated 9/18/97treacher collins syndrome. DEFINITION An autosomal dominant disorder http://www.icondata.com/health/pedbase/files/TREACHER.HTM

Pediatric Database (PEDBASE) Discipline: GEN Last Updated: 9/18/97 TREACHER COLLINS SYNDROME DEFINITION: An autosomal dominant disorder characterized by certain facial features including downward slanting palpebral fissures, sunken cheekbones, receding chin, and malformed ears. EPIDEMIOLOGY: incidence: ? age of onset: at birth risk factors: familial - autosomal dominant with high penetrance chrom.#: 5q32-33.1 gene: ? M = F ? advanced paternal age PATHOGENESIS: 1. Background also called Mandibulofacial Dysostosis, Franceschetti-Klein Syndrome, and Franceschetti Syndrome first case reported by A. Thomson in 1846 two cases reported by E. Treacher Collins in 1900 called Mandibulofacial Dysostosis by Franceschetti and Klein in 1940 2. Pathogenesis between 50-60% of cases represent de novo mutations there may be an autosomal recessive form CLINICAL FEATURES: 1. Facial Manifestations downward slanting palpebral fissures (89%) malar hypoplasia (sunken cheekbones) - 81% mandibular hypoplasia (receding chin, micrognathia) - 78% microtia (malformation of the auricles) - 77% lower eyelid coloboma (fissure or gap) - 69% partial or total absence of the lower eyelashes medial to the coloboma ( 53%) hearing loss (conductive or sensorineural) - 40% visual loss (37%) external ear canal defect (36%) cleft palate (28-35%) projection of scalp hair onto the lateral cheek (26%) others: deformed pinnas blind fistulas appearing between the corners of the mouth and the ears dental malocclusion widely-spaced, hypoplastic and/or displaced teeth

35. Treacher Collins Syndrome : Meddie Health Search (Rating 0.00 Votes 0) Rate It. Treacher Collins Family SupportGroup Support forum for treacher collins syndrome. (Rating 0.00 http://www.meddie.com/search/Health/Consumer_Support_Groups/Facial_Differences/T

HOME ADD A LINK MODIFY A LINK NEW LINKS ... TOP RATED Search Meddie: the entire directory only this category More search options Home Health Consumer Support Groups ... Facial Differences : Treacher Collins Syndrome ITEMS: LINKS: Microtia - Congenital Ear Institute Information on microtia for families and health care providers. Spanish version as alternative. (Rating: 0.00 Votes: 0) Rate It The Treacher Collins Network Support for families affected by this condition. (Rating: 0.00 Votes: 0) Rate It Treacher Collins Family Support Group Support forum for Treacher Collins Syndrome. (Rating: 0.00 Votes: 0) Rate It Treacher Collins Syndrome - A Personal View Information, personal insight, discussion forum and the exclusive "TCS Around the World" feature. (Rating: 0.00 Votes: 0) Rate It HOME ADD A LINK MODIFY A LINK ... Design © ISC Enterprises Inc.

36. Treacher Collins treacher collins syndrome. Who to options, etc. with families, friendsof those who have treacher collins syndrome (TCS). TCS Connection. http://www.communicationdisorders.net/treachercollins.html

Treacher Collins Syndrome Who to Contact Treacher Collins Foundation P.O. Box 683 Norwich, VT 05055 800-TCF-2055 Web: http://www.treachercollinsfnd.org/ Where to Go to Chat with Others Treacher To interchange feelings, concerns, issues, treatment options, etc. with families, friends of those who have Treacher Collins Syndrome (TCS). TCS Connection Learn More About It Treacher Collins-Franceschetti Syndrome 1 - From OMIM Mandibulofacial Dysostosis, Treacher Collins Type, with Limb Anomalies - From OMIM Mandibulofacial Dysostosis, Treacher Collins Type, Autosomal Recessive - From OMIM Web Sites The Treacher Collins Network Reflections on Treacher Collins Syndrome Treacher Collins Syndrome HOME

37. Treacher Collins Syndrome Top Health Consumer Support Groups Facial Differences TreacherCollins Syndrome (2). Microtia Congenital Ear Institute - The http://www.foundhealth.com/Health/Consumer_Support_Groups/Facial_Differences/Tre

Advertisement Foundhealth.com Search All Terms Any Term Tips Browse foundhealth.com Health calculators Fast Food Database Speakers Bureau How to evaluate sites Submit a site Contact us Home - main directory Top Health Consumer Support Groups Facial Differences : Treacher Collins Syndrome Microtia - Congenital Ear Institute - The Microtia - Congenital Ear Institute is run by J. Arturo Bonilla, M.D. The Institute sees and operates on hundreds of children born with microtia and atresia. The Treacher Collins Network - A condition that affects the craniofacial area with slight to very severe anomalies. The most widely affected area is that of the cheek bones and jawbones, which are underdeveloped. This sometimes leads to breathing and eating complications. Other anomalies include microtia (absence or underdevelopment of the outer ear), hearing loss, abnormal eyelids, downward slanting of the eyes. Help build the largest human-edited directory on the web. Submit a Site Open Directory Project Become an Editor Parts of the Open Directory made available on foundhealth.com have been modified.

38. Treacher Collins Syndrome treacher collins syndrome. Etiology of TCS, Present Research. Managementof TCS, Genetic Counseling. What is treacher collins syndrome (TCS)? http://web.nmsu.edu/~lleeper/pages/tcollins/

TREACHER COLLINS SYNDROME This site provides informative data about Treacher Collins Syndrome (TCS) for (future!) Speech-Language pathologists. My hope is to promote quality service for individuals with TCS. Click here: to send me an e-mail. Katie Cummins Table of Contents What is TCS Communication Features of TCS Prognosis Etiology of TCS Present Research Management of TCS Genetic Counseling What is Treacher Collins Syndrome (TCS)? Treacher Collins Syndrome, also known as Mandibulofacial Dystosis or Francheschetti-Klein syndrome, is a rare and very complex genetic condition involving underdevelopment of the structures of the head and face” (Treacher Collins Foundation). *Syndrome = the presence of multiple anomalies (deviations) in a single individual with all those anomalies having one primary cause. *Age of onset = at birth.

39. Treacher Collins Connection Mission To build a community of people with treacher collins syndrome and theirfamilies in an environment that transforms people through face to face sharing http://www.tcconnection.org/aboutus.html

CONNECTING PEOPLE one step at a time Mission : To build a community of people with Treacher Collins syndrome and their families in an environment that transforms people through face to face sharing of stories, surgeries, pictures, heartaches, and love. Tre acher Collins: Treacher Collins syndrome is a genetic craniofacial syndrome that is characterized by a range of distinctive facial anomalies. The main characteristics of TCS are downward slanting eyes, small lower jaw, and malformed or missing ears. These anomalies cause hearing, breathing, and eating problems. Individuals and families also struggle with the psychological aspects of having a facial difference. About 1 in every 10,000 babies is born with TCS. For more information about Treacher Collins syndrome and to view personal experiences of people with TCS, please visit www.treachercollins.org Vision : Each event is essential in many ways; not only is it important for people with TCS to meet others like them, it is equally important to network about medical doctors, procedures, and hospitals. The TCC will organize at least one yearly event to bring together those with TCS and their families. History Five volunteers founded the TCC in 2001 as a result of successfully organizing the first TCS retreat. Over 65 people attended the first retreat and as a result, we will now have an annual TCS retreat. Over 100 people attended our 2002 TCS retreat on June 28-30 in Columbia, MD.

40. Health Information Resource Database: Treacher Collins Foundation Collins Foundation is a nonprofit organization founded in 1988 to serve the needsof families/individuals affected by treacher collins syndrome, a rare facial http://www.health.gov/NHIC/NHICScripts/Entry.cfm?HRCode=HR2394

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