61. Www.csh.dk/sjaeldne_handicap/sotos_syndrom/alt_sotos_syndrom.txt Informationskilder Litteraturforslag Cole, TRP Hughes, HE sotos syndrome. Karlberg,J. Wit, JM Linear Growth in sotos syndrome. Short Communication. http://www.csh.dk/sjaeldne_handicap/sotos_syndrom/alt_sotos_syndrom.txt

62. Canadian Directory Of Genetic Support Groups (Sjogren's Syndrome) SmithLemli-Opitz (RSH) Adovcacy Exchange (Smith-Lemli-OpitzSyndrome) sotos syndrome Support Association (SSSA) (sotos syndrome) Speak http://www.lhsc.on.ca/programs/medgenet/s_sup.htm

Index by support group Canadian Directory of Genetic Support Groups Scapuloperoneal Disease Association (Scapuloperoneal Disease) Schizophrenia Society (Schizophrenia) Shwachman-Diamond Syndrome Canada Inc. (Shwachman-Diamond Syndrome) Scleroderma Foundation (Scleroderma) Scoliosis Association Inc. (Scoliosis) Share and Care Cockayne Syndrome Network (Cockayne Syndrome) Shy-Drager Syndrome Support Group (Shy-Drager Syndrome) Sjogren's Syndrome Foundation Inc. (Sjogren's Syndrome) (Smith-Lemli-Opitz Syndrome) Sotos Syndrome Support Association of Canada (SSSAC) (Sotos Syndrome) Speak Easy Canada (Stuttering) Spina Bifida and Hydrocephalus Association of Canada (Spina Bifida, Hydrocephalus) Spotlight 6 (Chromosome 6 Disorders) Stickler Involved People (Stickler Syndrome) Sturge-Weber Foundation (Canada) Inc.

63. MAGIC FOUNDATION Website http//www.shwachmandiamondamerica.org/ sotos syndrome sotos syndromeSupport Association PMB 235 Three Danada Square East Wheaton, IL. http://www.magicfoundation.org/resources/support.htm

Support Groups Aarskogg Syndrome Aarskogg Syndrome Parent Support Group 62 Robin Hill Ln, Levittown, PA 19055-1411 Contact: Shannon Caranci, (215) 943-7131 Achondroplasia Little People of America P.O. Box 9897 Washington, DC 20016 Arthrogryposis Multiplex Congenita AVENUES, PO Box 5192 Sonora, CA 95370 CHARGE Syndrome Charge Syndrome Foundation 2004 Parkade Blvd Columbia, MO 65202-3121 Website: http://www.geocities.com/Heartland/1220/ Cockayne Syndrome PO Box 552 Stanleytown, VA 24168 Contact: Theresa Wall, (703) 629-2369 Coffin-Lowry Syndrome c/o Mary Hoffman 3045 255th Avenue S.E. Issaquah, WA 98029 Website: http://clsfoundation.tripod.com Email: CLSFoundation@yahoo.com Coffin-Siris Syndrome Support Group 1524 Marshall St. Antioch, CA 94509 Contact: Juanita Garrison Website: http://members.aol.com/CoffinSiri/default.htm Ellis van-Creveld Syndrome Support Group 540 S.Forest St,4-203

64. Mioti: Medical Condition Condition sotos syndrome. NINDS Soto's Syndrome Information Page. NORD SotosSyndrome. Information from the National Organization for Rare Disorders. http://www.mioti.com/cat/condition/condition.asp?Cat=SotosSyndrome

65. Online And Offline Support: S sotos syndrome. Please note People with sotos syndrome have craniofacialanomalies that do not require reconstructive surgery. Sotos http://www.widesmiles.org/support/s.html

S Scleroderma Please note: Scleroderma can affect any part of the body. The Scleroderma Research Foundation People Served: Individuals dealing with scleroderma Services provided: Networking, support, and advocacy Address: Pueblo Medical Commons, 2320 Bath Street, Suite 307, Santa Barbara CA 93105 Phone number: 1-800-441-CURE Email Address: srfcure@srfcure.org Website: http://www.srfcure.org/ United Scleroderma Foundation People Served: Individuals dealing with scleroderma Services provided: Offline: Conferences, Chapters and Support Groups, Literature, Online: links and chats on AOL Street Address: 734 E Lake Avenue, Suite 5, Watsonville CA 95077 Mailing Address: PO Box 399, Watsonville CA 95077 Phone number: 1-800-722-HOPE Email Address: outreach@scleroderma.com Website: http://www.scleroderma.com/ Septo-optic Dysplasia Please note: Septo-optic dysplasia can occur with craniofacial anomalies. Septo-optic Dysplasia Support Group People served: Individuals and families dealing with septo-opto dysplasia Services provided: Information, resources, email discussions, chats, and photo gallery Contact person: Cindy Rose Email address: roses8@impulsedata.net

66. BSPED Research Appeals And Recruitment Bulletin Board Familial sotos syndrome In the department of Paediatrics of the Leiden UniversityMedical Center (the Netherlands) we have started a study on the etiology http://www.bsped.org.uk/bulletin.htm

BSPED Research Appeals And Recruitment Bulletin Board For members only: Post a new message to this page Send an urgent message to all BSPED members with eMail TOPICS FOR BES 2004 Dear Colleague, As the Academic Liaison Officer for the BSPED, it is my responsibility to put together a competitive bid against other constituent societies of the BES for topics for stand-alone lectures, symposia, clinical management workshops or "what would the expert do" sessions for the proposed BES meeting in 2004 which is joint with the European Federation of Endocrine Societies in Brighton. If any of you have any burning topics that you would like to see given an airing at this meeting, I would be grateful if you would email me a list of suggested speakers, titles of proposed talks and contact details so that I might pull these ideas together into a strong bid. I would be grateful for your thoughts before the middle of July. Please respond to this message as the better our ideas, the stronger the bid and the greater likelihood we will have of getting more paediatric content in future BES meetings. Best wishes Dr John Gregory email: gregoryjw@cardiff.ac.uk

67. Willkommen Bei E I S S Eltern-Initiative, Sotos-Syndrom Translate this page Nehmen Sie mit uns Kontakt auf! What is EISS? EISS is a parent supportgroup for families with a child which has sotos syndrome. http://www.sotossyndrom.de/

Wer sind wir? What is EISS? EISS is a parent support group for families with a child which has Sotos syndrome. Founded in 1995 to give families a forum for discussion, one of our main goals is to supply families and professionals with information about this rare overgrowth syndrome. If you are interested in contacting us, please don't hesitate to do so. Besucher E-mail: info@sotossyndrom.de Diese Internet-Seiten entstanden

68. Project Exceptional Web Links Search Result Site Name sotos syndrome Support Association. Site Address http//www.well.com/user/sssa/.Summary sotos syndrome support and information. http://www.projectexceptional.org/link_detail.cfm?ID=179

69. Project Exceptional Web Links Search Result awareness. details, sotos syndrome Support Association, http//www.well.com/user/sssa/,sotos syndrome support and information. details http://www.projectexceptional.org/lss_link_result.cfm

Your search result. Click the "detail" link for further information on the results below. Website links will open in a new browser window. You may use your browser "back" button to return to search menu. Click Here to report inaccuracies on links below. Submit your website to our database. Site Name Site Address Summary [details] Ability OnLine Support Network http://www.ablelink.org Email support system for people with special needs [details] Adaptivemall.com http://www.adaptivemall.com Resources for adaptive positioning [details] Administration on Developmental Disabilities http://www.acf.dhhs.gov/programs/add Federal agency for people with developmental disab [details] Alliance for Technology Access http://www.ataccess.org Assistive technology information [details] Angelman Syndrome Foundation, Inc. http://www.angelman.org/ Information and resources about Angelman Syndrome [details] Angels Among Us http://www.home.earthlink.net/~julhyman/angel2.htm Resources on Angelman Syndrome [details] Birth to Three http://www.birth23.org/ Birth to Three information [details] Caring for Every Child's Mental Health Campaign http://www.mentalhealth.org/child/default.asp

70. Support Groups 1. Autism. 2. Down syndrome. 3. Dyspraxia. 4. sotos syndrome. 5. Learning disabilities(LD). back to top. 4. sotos syndrome Date 17 Nov 2000 Hi, I am Michelle. http://web.singnet.com.sg/~liewping/postcards.htm

Home coming events updated 27 Feb 2003 volunteering Abt me for Parents local service providers local disability organisations articles support groups for Professionals career in Sped professional associations local research Support Groups me if you would like to contribute any story, article or teaching ideas. If you wish to start a support group, pls contact me Should my child take Chinese ? My child can't keep still for 1 minute. Should my child repeat kindergarten? . . . Autism Down syndrome Dyspraxia Sotos syndrome ... Learning disabilities (LD) 6. Dyslexia or Specific Learning Disabilities (SpLD) Hyperactivty-Attention-Deficit Disorder (ADHD) Tourette syndrome NEW Autism If you wish to join the Autism Resource Centre 's support groups, please contact Ms Elsie Cheong, ARC(S) Information Officer, to reserve a place. These meetings are facilitated by with the assistance of a parent team leader. Tel: 6323 3258 ext 15 or email: arc_infolib@pacific.net.sg

71. Home Page Of John Sotos Are you in the right place? sotos syndrome Support Association; Sotoslaw firm (Toronto, Canada); Sotos, Peter (author) has no home page; http://www.sotos.com/

Home Page of John Sotos Are you in the right place? Sotos Syndrome Support Association Sotos law firm (Toronto, Canada) Sotos, Peter (author) has no home page Google search for "Sotos" Cool Stuff Most of you will want to look at the Doctor Zebra web site . It includes the Medical History of American Presidents and the Mad Cow Calculator. Zebra Cards Genetics and Disease WebMD Health Risk Appraisal What I've Learned How to Connect a non-USB Kyocera Smartphone to a USB Macintosh Half-Baked Ideas (More to come!) How the Food and Drug Administration (FDA) might regulate medical software Email Please use the Doctor Zebra web site When photocopy machines first started to come out, people photocopied their buns. Now, with computers, we photocopy our very being. Douglas Coupland Microserfs, Last updated: 29 April 2001

72. Identification And Characterisation Of Genes sotos syndrome and Cataract Annette. Kurotaki N et al. (2002) Haploinsufficiencyof NSD1 causes sotos syndrome. Nat. Genet., 30, 365366. http://cmgs.org/MRCPath 0203/notes_newcastle/Identification_Characterisation_Gen

73. æ“V«Ž¾Š³‚̃Tƒ|[ƒgƒOƒ‹[ƒvî•ñ The CoffinLowry Syndrome Foundation, (sotos syndrome, ?), sotos syndrome Support Association, Smith-Magenis ?, http://www.mirai.ne.jp/~mizuno/support-j.htm

‰E—ñ‚͍‘ŠO‚̃TƒCƒg‚Å‚· w•ŸŽƒ‚ƏáŠQŽÒŽx‰‡î•ñ‚Ì‘–ÚŽŸx MUMS National Parent-to-Parent Network u‚³‚ë‚ñvŠ³ŽÒáŠQŽÒ’c‘́^Ž©•ƒOƒ‹[ƒvƒKƒCƒh Family Village “ï•aî•ñƒZƒ“ƒ^[ National Organization for Rare Disorders (NORD) ... Special Child Magazine õF‘ÌŽ¾Š³ ƒ_ƒEƒ“ÇŒóŒQ National Down syndrome Congress ƒOƒ‹[ƒv‚½‚ñ‚Û‚Û ƒGƒ“ƒWƒFƒ‹ @iˆ¤’mŒ§j The Down Syndrome Reseach Foundation ƒsƒ ƒA @iŠò•ŒŒ§j ‚S”ԐõF‘Ì 4p- Support Gruop (Wolf-Hirschhorn Syndrome) Cri Du Chat Support Group of Australia i“Œ‹žˆã‰È‘åŠwˆâ“`Œ¤‹†Žºj Cri-du-Chat Syndrome Support Group 5p- Society ‚W”ԐõF‘Ì Trisomy 8 ‚X”ԐõF‘́@ Chromosome 9p Netwo‚’‚‹ Trisomy 9 International Parent Support ‚P‚O”ԐõF‘Ì Distal trisomy 10q families ‚P‚P”ԐõF‘Ì 11q Network i‰¢Bj@ 11q Net i•Ä‘j Int'l 11;22 translocation Network SOFT :Support Organization for Trisomy 18, 13 and Related Disorders ‚P‚U”ԐõF‘Ì Disorders of Chromosome 16 Foundation ‚P‚W”ԐõF‘Ì The Chromosome 18 Registry and Research Society ‚Q‚Q”ԐõF‘Ì ‚Q‚Q‚‘‚P‚PD‚QŒ‡Ž¸ÇŒóŒQF‚Q‚QHeart Club Parent Support Group for Chromosome 22 related disorders Chromosome 22 Central ƒ^[ƒi[ÇŒóŒQAƒgƒŠƒvƒ‹XÇŒóŒQAX‰ßèÇŒóŒQ ƒgƒŠƒvƒ‹X—«iTriple X female) Tetra/Pentasomy X Support Group ƒNƒ‰ƒCƒ“ƒtƒFƒ‹ƒ^[ÇŒóŒQ Kleinfelter Suppot Group Understanding KFS @ E ‚`‚`‚j‚r‚h‚r ¬‡«‘BˆÙŒ`¬Ç Mixed gonadal dysgenesis support group ‚»‚Ì‘¼‚̐õF‘ÌŽ¾Š³A‹H­õF‘Ì‹NˆöŽ¾Š³ CDOF Chromosome Deletion Outreach UNIQUE : Rare chromosome disorders Support Groups for Chromosomal Conditions What is a partial trisomy?

74. UHS Subject Area: Science Retinoblastoma. Eye Cancer Network. sotos syndrome. Pediatric Database. SotosSyndrome Support Association. Spina Bifida. Spina Bifida Fact Sheet. http://www.uhs.ucf.k12.pa.us/library/sci.html

Science Astronomy Nine Planets Your Sky Interactive Planetarium Constellations and Their Stars Cambridge Relativity ... The SETI Institute Online Cells Mining Company Guide to Cell Biology Cell Biology. ..MIT Biopoint: Parts of the Cell Cell Biology...University of Arizona Virtual Cell Paul Thiessen's Page...John Hopkins University ... Ms. Dietrich's Links Geology Museum of Paleontology Geology Wing Geology Link Franklin Institute's Geology Page U.S. Geologic Survey Online Publications ... A Science Odyssey: Earth and Life Sciences Genetic Disorders/Birth Defects General Websites Karolinska Institute Genetic Alliance National Organization for Rare Disorders, Inc. March of Dimes Fact Sheets ... Medline Achondroplasia DKennedy/Dwarfism Adrenoleukodystrophy National Institute of Neurological Disorders Albinism Facts about Albinism National Organization for Albinism and Hypopigmentation Alpha 1 Antitrypsin Deficiency Alpha One Foundation Amyotrophic Lateral Scoliosis (Lou Gehrig's Disease) ALS Association Philadelphia Chapter of ALS Association Angelman Syndrome IASL Cri-Du-Chat Syndrome Support Group Cystic Fibrosis Cystic Fibrosis Foundation Canadian Cystic Fibrosis Foundation Edward Syndrome (Trisomy 18)

75. Sotos Syndrom - Små Och Mindre Kända Handikappgrupper sotos syndrome a study of the diagnostic criteria and natural history. MainoDM, Kofman J, Flynn MF, Lai L. Ocular manifestations of sotos syndrome. http://www.sos.se/smkh/1997-29-020/1997-29-020.htm

Socialstyrelsen 106 30 Stockholm e-post Socialstyrelsen klassificerar sin utgivning i olika dokumenttyper Sotos syndrom Sjukdom/skada/diagnos Orsak till sjukdomen/skadan Symtom Diagnostik ... Databasreferenser Dokumentdatum: 2002-02-25 Version: 3.0 Artikelnummer: 1997-29-020 Socialstyrelsen Detta är ett utdrag ur Socialstyrelsens kunskapsdatabas om små och mindre kända handikappgrupper. Med små och mindre kända handikappgrupper avses ovanliga sjukdomar/skador som leder till omfattande funktionshinder och som finns hos högst 100 personer per miljon invånare. Syftet med databasen är att ge aktuell information om små och mindre kända handikappgrupper och om det stöd och den service som dessa grupper behöver. För ytterligare information om aktuell diagnos hänvisas till informationsmaterial, litteratur och databaser som anges under resp diagnos. Sjukdom/skada/diagnos Orsak till sjukdomen/skadan Symtom Diagnostik Praktiska tips mun-h-center@vgregion.se , Internetadress www.mun-h-center.com Resurspersoner Kurser, erfarenhetsutbyte, rekreation raoul.dammert.sallsyntadiagnoser@funka.nu

76. Gilbert S Syndrome Gilbert.s syndrome sotos syndrome Survey Analysis. © Walter Gilbert 2001.Background. sotos syndrome Survey Analysis. Various Statistics. http://www.hudsonriveraquarium.org/public-access-tv.htm

77. CLINICAL CASES Tratamento da Hipertensão Pulmonar em Criança e Adolescente Repercussões Psiquiátricasna Síndrome de Sheehan sotos syndrome a Case Report Twin Pregnancy http://members.tripod.com/gustavo_01/cases.html

LinkExchange Member CLINICAL CASES Associação de Doença de Hirschsprung e Síndrome de Noonan Associação Nifedipina retard e Ambroxol no Tratamento da Hipertensão Pulmonar em Criança e Adolescente Repercussões Psiquiátricas na Síndrome de Sheehan Sotos Syndrome: a Case Report ... A 62-Year-Old Woman with a syncopal episode and mild angina

78. Agenesis Of The Corpus Callosum--Angels Around The World The Potter Family Home Page Visit 3 year old Elijah with ACC, Hydrocephalusand sotos syndrome. See his baby pictures and family too. http://members.tripod.com/~scenicbeauty/AngelsAroundTheWorld.html

agenesis corpus callosum, callosal agenesis, ACC, corpus callosum, corpus collosum, dysgenesis corpus callosum, partial agenesis corpus callosum, thin, thinning corpus callosum, complete ACC, partial ACC, hypoplasia, hypoplastic corpus callosum, acallosal, callosal dysgenesis, absent corpus callosum, ANGELS AROUND THE WORLD (AGENESIS OF THE CORPUS CALLOSUM) ~~All are precious in His sight~~ To truly love someone is to see beyond the surface and accept them for who they are deep inside. Everyone has the right to feel good about themselves, to feel special and worthwhile and to be accepted for who they are. Angels In Disguise This page is dedicated to the children and adults around the world who happened to be born with a rare condition known as... "Agenesis of the Corpus Callosum." It's the fancy term meaning that the corpus callosum (the middle section of the brain which connects the right and left hemispheres together and allows for communication between the right and left side of the brain) is missing. What Causes It?

79. Personal Page Of Tracey Box Alex was born with sotos syndrome. A very rare genetic disorder that affects aroughly 1 in 80, 000. sotos syndrome. Mathias Photography. DMarie Scrapbooks. http://www.geocities.com/traceytbox/

Tracey Box I live in Bruce, Mississippi, a small town in the northern part of the state. I work from my home, taking care of my children and home. My hobbies are my family. I love spending time with them and doing all sorts of fun things like going to movies, camping and boating. I also love spending time on the computer, shopping, making scrapbooks, photography and working around my home. My husbands name is Rickey and we have been married for 8 years. We have three children. A daughter, Alex, age 7, a son, Barrett, age 3 and a daughter, Ashlyn, age 3. Barrett and Ashlyn are twins. I have two step-sons, Cassidy age 14, Cody age 12 and a step- daughter Kelly. Alex was born with Sotos Syndrome. A very rare genetic disorder that affects a roughly 1 in 80, 000. It is also referred to as Cerebral Gigantism Syndrome. Alex is a very high functioning child. She attends a regular classroom. She is taking piano lessons, tap and ballet. These are also good therapies, which take the place of Physical and Occupational Therapy, and she enjoys it all very much. She attends Speech Therapy, once a week for 30 minutes.

80. UMass-Amherst Medical Ethics The girl, known as D., suffers from sotos syndromealso called cerebral giganticismanunusual group of congenital abnormalities including epilepsy. http://www-unix.oit.umass.edu/~phil164/oncampus/debates/debates.html

Don Berkich Introduction Syllabus Links ... Home Debates Debate 3 Just for fun, let's do the case from Case 3 for this debate. You are welcome to bring your Arguments in for the sake of reference. Please note that Case 3 is an actual case that caused quite an uproar in England. You may be able to find additional information on it on the web. Below is the text of Case 3. [from Cases in Bioethics: Selections from the Hastings Center Report nd ed. B. Crigger, ed. New York: St. Martin's Press. pp. 212-213.] A retarded eleven-year-old girl from the city of Sheffield, England, had been booked to enter a hospital on May 4, 1975, for a sterilization operation. The girl, known as "D.," suffers from Sotos Syndromealso called cerebral giganticisman unusual group of congenital abnormalities including epilepsy. Characteristics of the disease include large hands, feet, and skull; poor coordination; and endocrine problems of unknown etiology. Intelligence ranges from normal to severe retardation, with most mildly retarded. ("D." had a normal intelligence range, a fair academic standard, and the understanding of a nine-to nine-and-a-half-year-old.) While authorities in the genetics of Sotos Syndrome are uncertain about its inheritability, they believe that it is not one disease but a heterogeneous group of disorders, and that it may be either a recessive trait or a new dominant mutation. Most cases of Sotos Syndrome have been sporadic, occurring equally in both sexes. Those afflicted do not seem to have a higher incidence of relatives affected than does the normal population, 'and the risk of genetic transmission is not known. There have been reports, however, of its occurrence among first cousins, identical twins, and between father and son.

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