1. Turner Syndrome Society - Home turner syndrome SOCIETY of the United States 14450 TC Jester, Suite 260, Houston TX 77014 Toll Free 800365-9944; P 832-249-9988; F 832-249-9987 tssus@turner http://www.turner-syndrome-us.org/

TS Conference 2004 July 30 - 1 in SEATTLE, WA. Click here for more information. Join Our E-mail list Volunteers Needed Announcements Turner Patient Questionnaire TSS Chapter Handbook 2004 Annual Conference Brochure TS Journal TSSUS Annual Conference To Be Held July 30 – August 1 Our New Mission Statement Pregnancy Potential and Turner Syndrome See all the benefits of membership by joining the TSS today. TSS has locations all over the globe. Check out our worldwide organizations. Or, find a local chapter near you. TURNER SYNDROME SOCIETY of the United States 14450 TC Jester, Suite 260, Houston TX 77014 Toll Free 800-365-9944; P: 832-249-9988; F: 832-249-9987 t ssus@turner-syndrome-us.org Join Our E-mail list Media Meets BBB guidelines for giving and AFP Member The Turner Syndrome Society of the United States is a not for profit organization recognized as tax exempt under Internal Revenue Code section 501(c)(3).

2. Tim's Turner Syndrome Page Some information about this disease and links to other sites. http://www.iland.net/~tdluke/trnrs.html

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3. Turner Syndrome Society - FAQ 1. What is turner syndrome? turner syndrome is a chromosomal condition that exclusively affects girls and women. 2. What causes turner syndrome? http://www.turner-syndrome-us.org/resource/faq.html

What is Turner syndrome? Turner syndrome is a chromosomal condition that exclusively affects girls and women. It occurs when one of the two X chromosomes normally found in females is missing or incomplete. The syndrome is named after Dr. Henry Turner, who was among the first to describe its features in the 1930's. What causes Turner syndrome? Turner syndrome is caused by the complete or partial absence of one of the two X chromosomes normally found in women. How is Turner syndrome diagnosed? A blood test, called a karyotype, analyzes the chromosomal composition of the individual. This is the most commonly used blood test to diagnose Turner syndrome. Does any one thing cause Turner syndrome? No. Turner syndrome is not associated with any environmental or any other factors generally associated with genetic problems. Despite many efforts, no real causes have been found to be linked to this condition. It appears to be a random event that can happen to anyone. What are the most common characteristics of Turner syndrome? The most common characteristics of Turner syndrome include short stature and lack of ovarian development. A number of other physical features, such as webbed neck, arms that turn out slightly at the elbow, and a low hairline in the back of the head are sometimes seen in Turner syndrome patients. Individuals with Turner syndrome are also prone to cardiovascular problems, kidney and thyroid problems, skeletal disorders such as scoliosis (curvature of the spine) or dislocated hips, and hearing and ear disturbances.

4. Turner Syndrome Clinical Studies At NIH If you have any medical questions or comments about this site, send email to langei@mail.nih.gov If you have any technical questions http://turners.nichd.nih.gov/

If you have any medical questions or comments about this site, send email to langei@mail.nih.gov If you have any technical questions or comments about this site, send email to baileyi@mail.nih.gov

5. Turner Syndrome Support Society INFORMATION, NEWS. ASPECTS, Our aim is to offer, support information to girls . adult women with turner syndrome,. their families and friends. LINKS, CONTACT. http://www.tss.org.uk/

WHAT IS TS INFORMATION NEWS ASPEC ... TS Our aim is to offer support information to adult women with Turner Syndrome, their families and friends. LINKS CONTACT

6. The MAGIC Turner Syndrome Home Page turner syndrome almost a consistent finding in Turner's Syndrome, the cause of which is Patients with Turner's Syndrome have abnormal body proportions characterized by markedly shortened http://www.magicfoundation.org/turners.html

Division Consultant Robyn Brockhouse Turner Syndrome Homepage Home ... This Page The MAGIC Foundation for Children's Growth Chicago, Illinois Established in 1989 Turner's Syndrome Division Turner's Syndrome Described by Dr. Henry Turner in 1938 as manifested with short stature, webbed neck, cubitus Valgus and sexual infantilism. Grumbach used the term "gonadal dysgenesis" to describe the syndrome. Many girls may have distinctive characteristics, while some girls may show few. Turner's Syndrome occurs in 1 in 3,000 live female births. Approximately 98% of pregnancies with Turner's Syndrome abort spontaneously and approximately 10% of fetuses from pregnancies that have spontaneously aborted have Turner's Syndrome. The syndrome represents a wide spectrum of clinical presentation, the most common of which is the classic Turner's Syndrome with 45 XO karyotype, less common the Mosaic Turner's Syndrome with Mosaic sex chromosome Karyotypes 45, X/46, XX, 45, X/46, XY. Short stature is almost a consistent finding in Turner's Syndrome, the cause of which is multifactorial, including intrauterine growth retardation, gradual decline in height velocity in childhood, absence of pubertal growth spurt and to end organ resistance resulting from skeletal dysplasia. Patients with Turner's Syndrome have abnormal body proportions characterized by markedly shortened lower extremities. The ultimate height range is between 55 to 58 inches. Familial height may play a role in determining the ultimate height in girls with Turner's Syndrome

7. Turner Syndrome turner syndrome resources, national and international support groups, clinics with genetic counselors and geneticists turner syndrome Society of the United States Website www.turnersyndrome-us.org. turner syndrome Organizations Worldwide http://www.kumc.edu/gec/support/turner.html

Turner Syndrome ( 45,X and variants Turner Syndrome Society of the United States 14450 T.C. Jester, Suite 260 Houston, TX 77014 USA Phone: 800.365.9944 or 832.249.9988 Fax: 832.249.9987 Website: www.turner-syndrome-us.org Turner Syndrome Organizations Worldwide Chapters and Support Groups Brochure , 2002 (.pdf) Camps for individuals with Turner Syndrome Turner Syndrome Society of Kansas City (KS / MO) Turner Syndrome Camp , Camp for 12-18 year-olds with Turner Syndrome , Ft. Collins, Colorado, July 2004 Canada Turner Syndrome Society of Canada 7777 Keele St, Fl 2 Concord ON, CN L4K 1Y7 Phone: (800) 465-6744 or (416) 660-7766 Fax: (416) 660-7450 or Sandi Hofbauer, Exec. Dir. 814 Glencairn Ave Toronto, Ont. M6B 2A3 Canada Tel: 800 465-6744 (Canada and USA) or 416-781-2086 Fax: 416-781-7245 Australia Turner Syndrome Association of Australia Limited P.O. Box 112 Frenchs Forest, N.S.W., Australia 2086 E-mail: turnersyn@syd.net.au Victorian Turner's Syndrome Association Inc. 31 Price Street Essenden, Victoria, Australia 3040

8. HTML REDIRECT A personal account of my growing up with turner syndrome. http://www.cnwl.igs.net/~poirier/

9. About Turner Syndrome This site is an information resource for those affected by, or interested in Turner s Syndrome. Click www.tss.org.uk to go the UK Turner s Syndrome Site. http://www.turnersyndrome.ca/

This site is an information resource for those affected by, or interested in Turner's Syndrome. Good places to start are: "About the Society," or "Got Questions?" The Turner's Syndrome Society's 23rd Annual Conference will be held in Vancouver, British Columbia from April 30 to May 2, 2004 at the Delta Vancouver Airport Hotel. Click here for more information. The Turner's Syndrome Society of Canada, a non-profit charitable organization, was founded in 1981 by an individual with TS who wanted to share experiences and information. It provides support services for individuals with TS and their families and disseminates up-to-date medical information to families, physicians and the general public. The Society is run by individuals with TS and their families, supported by professionals and governed by a Board of Directors. OUR THANKS FOR A UNIQUE DONATION The family and friends of Kathy Smith have honoured her 40th birthday with donations to the Society. Kathy is the loving aunt of member Lauren Runge. We will all benefit from this generous gift. Thank you all. Your thoughtfulness is greatly appreciated. We wish to thank the following corporate sponsors for their very generous financial support towards the updating and revision of our booklet "The X's & O's of Turner's Syndrome":

10. Turner Syndrome Clinical Trials Explains the importance of participating in turner syndrome clinical trials and how even participants who take placebos contribute and benefit from volunteering. http://www.turner-syndrome-clinical-trials.com

Research Provides Hope for Turner Girls Turner Syndrome is one of the few genetic diseases that affects only females. Humans have 23 pairs of chromosomes, one set from each parent. One of these pairs of chromosomes - the sex chromosomes - determines whether you are male (XY) or female (XX). In Turner's, there is a total or partial loss of one of the sex chromosomes. Because a Y-chromosome cannot function on its own, males lacking a sex chromosome are not produced. The X-chromosome can survive on its own, however, and the result is a girl with Turner Syndrome (XO). Determining the cause of the condition was due to extensive research, and the numerous girls and women who participated in early Turner Syndrome clinical trials. Genetic research did not stop there, however. Today, the goal is to identify the genes responsible for the medical problems associated with the disease. These include a webbed neck, short stature, lack of sexual development, non-verbal learning disabilities, heart and kidney defects and, in adult women, high blood pressure, diabetes and osteoporosis. Research also evaluates the effects of drugs, including hormones, on these conditions. Reason's To Join a Turner Syndrome Clinical Trial One of the most common motives for participating in a Turner Syndrome clinical trial is gaining access to new treatments. Of course, the possibility of being in the group using a placebo may appear to be of little immediate benefit. However, the advice from experts on effectively coping with the disease can be invaluable. In addition, participants benefit from the free examinations and assessments associated with the study.

11. About Turner Syndrome What is Turner s Syndrome? Turner s Syndrome is a condition that affects about one in every 2,500 females. It was first described http://www.turnersyndrome.ca/got_quest.html

What is Turner's Syndrome? Turner's Syndrome is a condition that affects about one in every 2,500 females. It was first described in 1938 by Dr. Henry Turner who observed a set of common physical features in some of his patients. However, it was not until 1960 that a chromosomal abnormality was found. Intellectually, girls with Turner's Syndrome are not at risk for mental retardation, but they may have learning problems, especially in arithmetic. Many also have greater difficulty on tasks requiring spatial skills, like map reading, puzzles, visual organization. Although they are not at increased risk for psychological problems, many do have decreased self-esteem and problems with body image. Children with Turner's Syndrome may also be hyperactive. Identifying Features of the Condition: Short stature (mean height of 4'7") Lack of secondary sexual characteristics and infertility Medical problems such as ear, eye, heart, kidney or thyroid difficulties, sugar diabetes, high blood pressure and keloid healing Secondary features such as low set ears, low hairline, webbed neck, pigmented moles, bending out of the elbows, and puffy hands and feet.

12. About Turner Syndrome (Canada) The Turner's Syndrome Society of Canada, a nonprofit charitable organization, was founded in 1981 by an individual with TS who wanted to share experiences and information. It provides support services for individuals with TS and their families and disseminates up-to-date medical information to families, physicians and the general public. (In French and English.) http://www.TurnerSyndrome.ca/

This site is an information resource for those affected by, or interested in Turner's Syndrome. Good places to start are: "About the Society," or "Got Questions?" The Turner's Syndrome Society's 23rd Annual Conference will be held in Vancouver, British Columbia from April 30 to May 2, 2004 at the Delta Vancouver Airport Hotel. Click here for more information. The Turner's Syndrome Society of Canada, a non-profit charitable organization, was founded in 1981 by an individual with TS who wanted to share experiences and information. It provides support services for individuals with TS and their families and disseminates up-to-date medical information to families, physicians and the general public. The Society is run by individuals with TS and their families, supported by professionals and governed by a Board of Directors. OUR THANKS FOR A UNIQUE DONATION The family and friends of Kathy Smith have honoured her 40th birthday with donations to the Society. Kathy is the loving aunt of member Lauren Runge. We will all benefit from this generous gift. Thank you all. Your thoughtfulness is greatly appreciated. We wish to thank the following corporate sponsors for their very generous financial support towards the updating and revision of our booklet "The X's & O's of Turner's Syndrome":

13. Clinical Features Of Turner Syndrome http://turners.nichd.nih.gov/ClinFrIntro.html

14. 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=Turner Syndro

15. What Is TS turner syndrome TS is a chromosome abnormality affecting only females, caused by the complete or partial deletion of the X chromosome. turner syndromeTS. http://www.tss.org.uk/whatis/WHATIS.htm

WHAT IS TS Definition Treatment Living With ... HOME WHAT IS TS The following description of Turner syndrome[TS] and explanation of some of the issues involved in living with Turner syndrome are not definitive and  a doctor or endocrine specialist should always be consulted whenever a diagnosis of Turner syndrome has been given.  The Turner Syndrome Support Society[UK] and other International Turner syndrome support groups can help with practical information on living daily with TS and can in most cases offer contact with other girls and women with TS and their families. Information about Turner syndrome can be found on the  internet and in books; sadly this information is not always correct, and the TSSS therefore strongly recommends that anyone concerned about TS should consult a health professional who specialises in Turner syndrome. In brief Turner syndrome [TS] is a chromosome abnormality affecting only females, caused by the complete or partial deletion of the X chromosome. The incidence of TS is approximately 1:2000 live female births.  Confirmation of a diagnosis of TS is by karyotype but a suspected diagnosis can be made by a series of characteristic physical features i.e. web neck, broad chest and widely spaced nipples, low hairline and increased carrying angle of the elbows and other features.  Two main clinical features of TS are short stature and non-functioning ovaries.  Diagnosis can be made at birth if, for instance, a newborn needs heart surgery because of coarctation of the aorta or because of oedema of the hands and feet.  Pre-natal diagnosis is sometimes made by chorionic villous sampling, amniocentesis or ultra sound.  However, most girls are diagnosed in early childhood when growth fails or later when the absence of a pubertal growth spurt and development of secondary sexual characteristics become apparent.

16. Turner Syndrome child in whom the diagnosis of turner syndrome has been confirmed by karyotype " charts, a comprehensive and comprehensible account. * " turner syndrome A Personal Perspective http://www.ibis-birthdefects.org/start/turnfact.htm

Tips for printing Turner Ullrich Syndrome 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 Turner Syndrome * Turner Syndrom * Sindrome de Turner * Turner Syndrome * Monosomy X Syndrome Bonnevie Ullrich Syndrome Genital dwarfism Gonadal Dysgenesis Morgani Turner Albright Ovarian dwarfism Schereshevskij Syndrome Schereshevskij Turner TS Turner Ullrich Syndrome Wiedemann * NOTE! Without proven X chromosome anomalies - consider Noonan Syndrome Pseudo Turner Turner Like Special Resources Turner Ullrich Syndrome A Selection of Internet Sites [*] Outstanding [P] For Professionals [Danish] [French] [German] [Norwegian] [Ukrainian] [P] TS - A clinical overview (1994) Pediatric Database - University of Alabama. An outline for pediatricians - 11 pages. [P][*] Health Supervision for Children with TS Policy Statement - American Academy of Pediatrics. " ... guidelines designed to assist the pediatrician for the child in whom the diagnosis of Turner syndrome has been confirmed by karyotype ... " [French][*][P] TS - Point de vue medicale, social, psychologique et emotionel ... "

17. Major Aspects Of Growth In Children (MAGIC) An organization providing support and education regarding growth disorders in children and related adult disorders. Includes Growth Hormone Deficiency, Barth Syndrome, Congenital Adrenal Hyperplasia, Precocious Puberty, RussellSilver Syndrome, turner syndrome, Thyroid Disorders Septo Optic Dysplasia, McCune-Albright Syndrome, and Rare Disorder/Hypophosphatasia. http://www.magicfoundation.org/

18. Turner Syndrome turner syndrome information and resources turner syndrome. turner syndrome is a genetic disease in which all or part of one X chromosome is The common anomalies of turner syndrome include short stature, epicanthal folds, low http://www.genomelink.org/turner

Turner syndrome Turner syndrome is a genetic disease in which all or part of one X chromosome is missing, resulting in X females or partially XX females. It occours in 1 of every 2.000-2.500 females born. The common anomalies of Turner syndrome include short stature, epicanthal folds, low nuchal hair line, shield-like chest, webbed neck, high arched palate, coarctation of the aorta, ventricular septal defect, renal anomalies, pigmented nevi, lymphedema, hypoplastic nails and inverted nipples. Get Herbal Alternatives Now Acne Allergy Antibiotics ... Wedding Informational Links Turner Syndrome Research - from Stanford University. Genetic Features of Turner Syndrome - from the National Institute of Child Health and Human Development National Institutes of Health. Chromosome XO syndrome - from National Library of Medicine. Turner syndrome - by Julie Hodson. Health Supervision for Children With Turner Syndrome - from American Academy of Pediatrics. Combination growth hormone and estrogen increase bone mineralization in girls with Turner syndrome - from the United States Department of Agriculture, Agricultural Research Service. Turner's Syndrome Karyotype - from GSLC.

19. Turner Syndrome: Toward Early Recognition And Improved Outcomes Detailed overview of this condition, including clinical features, genetics, diagnosis, defects and medical problems associated with the syndrome, and recommendations for treatment. Includes many photos. Requires free registration. http://www.medscape.com/viewprogram/2155

Register Log In June 2, 2004 Turner Syndrome: Toward Early Recognition and Improved Outcomes CE Faculty: Judith L. Ross, MD; Lori K. St. Dennis-Feezle, RN; Colleen Weber, RN Disclosures Release Date: December 23, 2002 Valid for credit through December 23, 2003 This activity has expired. CME in this activity indicates that it was developed according to ACCME guidelines and was certified for credit by one or more accredited CME or CE providers. Medscape cannot attest to the timeliness of expired CME activities. Editorial Content produced by the University of California, Irvine College of Medicine and Deborah Wood and Associates.This CE activity, "Turner Syndrome: Toward Early Recognition and Improved Outcomes," was originally offered as a live program certified for CE. Contents of This CE Activity Turner Syndrome: Toward Early Recognition and Improved Outcomes Turner Syndrome: Definition, Epidemiology, and Clinical Features Diagnosis and Genetics Turner Syndrome: Affect on Body Systems Lymphatic System Defects Other Anomalies Associated With Turner Syndrome Orthopedic Abnormalities Growth Deficits Other Physiological and Psychosocial Issues Referral, Testing, and Treatment

20. Welcome: Humatrope.com Provides information about Humatrope, growth hormone deficiency, and turner syndrome. http://www.humatrope.com

Prescribing Information Resources and Links Glossary Ask Lilly ... Privacy Statement This site is intended for use by United States residents only. For more information about growth hormone deficiency, contact your doctor or other health care professional. HG 16069

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