1. CdLS USA Foundation: Cornelia De Lange Syndrome The cornelia de lange syndrome (CdLS) Foundation is a nonprofit 501 (c) (3) voluntary health organization based in Avon, Connecticut (USA). http://www.cdlsusa.org/

Your browser does not support script A Community united by Cornelia de Lange Syndrome Welcome to the official web site of the CdLS-USA Foundation. We hope the information on this site will shed light on any questions you may have about Cornelia de Lange Syndrome and this Foundation. The CdLS Foundation is a family support organization which exists to reach out, provide help and offer hope to everyone touched by this genetic condition. Our primary purpose is to offer support on a personal basis and we encourage you to let us know how we can help you and the person in your life with CdLS. Please join us and support our mission of Reaching out, Providing help and Giving hope to everyone touched by CdLS. Schedule Your CdLS Event Online Did you know that you can schedule your CdLS Awareness Activity or CdLS Gathering online? The online forms are accessible via the links below: NEWS Click above to connect with a family in your area FEATURED ARTICLES: Reflux — Managing a Common Concern GI Distress — Diverse Manifestations WWW CdLSusa.org

2. Cornelia De Lange Syndrome / Family Village Library cornelia de lange syndrome. Who to Contact Search Google for "cornelia de lange syndrome" Who to Contact http://www.familyvillage.wisc.edu/lib_cdls.htm

Cornelia de Lange Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Cornelia de Lange Syndrome" Who to Contact The Cornelia de Lange Syndrome Foundation, Inc. 302 West Main Street, #100 Avon, CT 06001 860-676-8337 - Fax Web: http://www.cdlsusa.org/ The Cornelia de Lange Syndrome Foundation is a family support organization which exists to reach out, provide help and offer hope to everyone touched by this genetic condition. Our primary purpose is to offer support on a personal basis and we encourage you to let us know how we can help you and the person in your life with CdLS. Where to Go to Chat with Others CDLS-KIDS An e-mail discussion list for parents, caregivers, extended family, and friends of children with CDLS. CDLS On-Line Parent Support Group Learn More About It Facts About Cornelia de Lange Syndrome About CDLS Cornelia de Lange Syndrome information from OMIM Cornelia de Lange Syndrome information from Ped Base Web Sites Cornelia de Lange Syndrome Foundation Web Site Cornelia de Lange Syndrome - UK Cornelia de Lange Syndrome (CdLS) Online Support Group Jessica's Place Amanda's Room Kayla's (Prink) Web Site Back to [ C - D Family Village Home Library Coffee Shop ... Information Last Updated 11/20/2003 by familyvillage@waisman.wisc.edu

3. NORD - National Organization For Rare Disorders, Inc. Offers the synonyms, a general discussion and further resources. http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Cornelia de L

4. CORNELIA DE LANGE SYNDROME : Contact A Family - For Families With Disabled Child A description of cornelia de lange syndrome, its inheritance patterns and prenatal diagnosis. http://www.cafamily.org.uk/Direct/c72.html

printer friendly CORNELIA DE LANGE SYNDROME home more about us in your area conditions information ... how you can help search this site Did you find this page helpful? yes no Cornelia de Lange: Brachmann-de Lange; De Lange I syndrome; Amsterdam dwarfism Cornelia de Lange syndrome (CDLS) is rare and affects between 1 in 40,000 and 1 in 100,000 babies born. Children with Cornelia de Lange syndrome have a particular facial appearance and often look like brothers and sisters. They are small at birth and remain small compared to children of the same age. The ability to learn is delayed in children but this varies from mild to severe. Almost all have limb abnormalities which range from small arms to complete absence of the forearms. Feeding and bowel problems, particularly gastro-oesophageal reflux, are also present. In almost all cases the children will have an unusual marbled appearance to the skin on their arms and legs, particularly when they are cold. Some of the children will have psychological and behavioural problems including autistic-like features and self-injury. Other problems including heart problems may also be present.

5. EMedicine - Cornelia De Lange Syndrome : Article By Mustafa Tekin, MD cornelia de lange syndrome cornelia de lange syndrome (CDLS) is a multiple congenital anomaly syndrome characterized by a distinctive facial appearance, prenatal and postnatal growth deficiency http://www.emedicine.com/ped/topic482.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Pediatrics Genetics And Metabolic Disease Cornelia De Lange Syndrome Last Updated: March 7, 2002 Rate this Article Email to a Colleague Synonyms and related keywords: CDLS, Brachmann-de Lange syndrome, de Lange syndrome, Amsterdam syndrome, typus degenerativus amstelodamensis, growth deficiency, feeding difficulties, psychomotor delay, behavioral problems, upper extremity malformation, characteristic facies AUTHOR INFORMATION Section 1 of 11 Author Information Introduction Clinical Differentials ... Bibliography Author: Mustafa Tekin, MD , Assistant Professor of Pediatrics and Genetics, Division of Pediatric Molecular Pathology and Genetics, Ankara University School of Medicine, Turkey Coauthor(s): Joann Bodurtha, MD, MPH , Associate Chairman, Associate Professor, Department of Human Genetics, Medical College of Virginia Mustafa Tekin, MD, is a member of the following medical societies:

6. HealthlinkUSA Cornelia De Lange Syndrome Links Find More on cornelia de lange syndrome. Not finding exactly what you need on%3A cornelia de lange syndrome%3F Why not give http://www.healthlinkusa.com/82ent.htm

7. Baylee's Web Suite Cornelia De Lange Syndrome Specially geared towards new parents, family and friends of CdLS children. Information about the disease as well as Baylee's personal progress. http://www.geocities.com/Heartland/Plains/1508/

8. CdLS USA Foundation: Cornelia De Lange Syndrome The cornelia de lange syndrome (CdLS) Foundation is a nonprofit 501 (c) (3) voluntary health organization based in Avon, Connecticut (USA). The Foundation provides a host of services that A Community united by. cornelia de lange syndrome. Welcome to the official web site of the CdLSUSA you may have about cornelia de lange syndrome and this Foundation. http://www.cdlsoutreach.com/

Your browser does not support script A Community united by Cornelia de Lange Syndrome Welcome to the official web site of the CdLS-USA Foundation. We hope the information on this site will shed light on any questions you may have about Cornelia de Lange Syndrome and this Foundation. The CdLS Foundation is a family support organization which exists to reach out, provide help and offer hope to everyone touched by this genetic condition. Our primary purpose is to offer support on a personal basis and we encourage you to let us know how we can help you and the person in your life with CdLS. Please join us and support our mission of Reaching out, Providing help and Giving hope to everyone touched by CdLS. Schedule Your CdLS Event Online Did you know that you can schedule your CdLS Awareness Activity or CdLS Gathering online? The online forms are accessible via the links below: NEWS Click above to connect with a family in your area FEATURED ARTICLES: Reflux — Managing a Common Concern GI Distress — Diverse Manifestations WWW CdLSusa.org

9. CdLS USA Foundation: Facts About CdLS are also found in some individuals. Top of Page. Why is it called cornelia de lange syndrome (CdLS)? In 1933, Dr. Cornelia de Lange http://www.cdlsusa.org/about_cdls/faq.html

Your browser does not support script FAQs About CdLS What is a Syndrome? How is CdLS recognized? Why is it called Cornelia de Lange Syndrome (CdLS)? How many people have CdLS? ... If my child has CdLS, what can I expect? What is a Syndrome? "Syndrome" is a medical term for a condition in which there is a collection of signs (observable body changes) and symptoms (problems observed by the patient) recognizable by a doctor's exam. Individuals with a syndrome may not have all of its associated signs and symptoms, but they must have enough to be considered "diagnostic." Conversely, because someone may display some of the signs and symptoms of a syndrome, does not necessarily mean they have it. Top of Page How is CdLS recognized? CdLS is a congenital syndrome, meaning it is present from birth. Most of the signs and symptoms may be recognized at birth or shortly thereafter. A child need not demonstrate each and every sign or symptom for the diagnosis to be made. As with other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include: low birthweight (often under five pounds), slow growth and small stature, and small head size (microcephaly). Typical facial features include thin eyebrows which frequently meet at midline (synophrys), long eyelashes, short upturned nose and thin, downturned lips. Other frequent findings include excessive body hair (hirsutism), small hands and feet, partial joining of the second and third toes, incurved fifth fingers, gastroesophageal reflux, seizures, heart defects, cleft palate, bowel abnormalities, feeding difficulties, and developmental delay. Limb differences, including missing limbs or portions of limbs, usually fingers, hands or forearms, are also found in some individuals.

10. Cornelia De Lange Syndrome cornelia de lange syndrome. cornelia de lange syndrome (CDLS), also known as Bachmannde Lange syndrome, is a genetic disorder present from birth. http://rarediseases.about.com/cs/cdls/a/101903.htm

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') About Rare / Orphan Diseases Rare Diseases C - D Rare Diseases: C ... Rare cancers zau(256,152,145,'gob','http://z.about.com/5/ad/go.htm?gs='+gs,''); Is it a Rare Disease? Rare Diseases A - B Rare Diseases C - D Rare Diseases E - H ... Help zau(256,138,125,'el','http://z.about.com/0/ip/417/0.htm','');w(xb+xb); Stay Current Subscribe to the About Rare / Orphan Diseases newsletter. zau(256,152,100,'hs','http://z.about.com/5/ad/hs.htm?zIhsid=00',''); Search Rare / Orphan Diseases Email to a friend Print this page Stay Current Subscribe to the About Rare / Orphan Diseases newsletter. Suggested Reading Internet links on CDLS Elsewhere on the Web CdLS-USA Foundation Most Popular ALD and Lorenzo's Oil The Elephant Man's Bones Reveal Mystery Prune Belly (Eagle-Barrett) Syndrome Progeria Syndromes ... Mad Cow Disease and Humans What's Hot Autoimmune Kidney Disease Tourette Syndrome Christmas Disease Bugs, PANDAS, and Tics ... Dystonia and Botox Injections Cornelia de Lange Syndrome From Mary Kugler Your Guide to Rare / Orphan Diseases Sign up for my Newsletter Distinctive facial features help identify syndrome Symptoms Language and behavior problems Treatment RATE THIS ARTICLE Would you recommend this article?

11. Special Child: Disorder Zone Archives - Cornelia De Lange Syndrome Disorder Zone. Archives. cornelia de lange syndrome. Madalyn Gilchrist. Ketchel Clements. Introduction. cornelia de lange syndrome (CdLS) is a disorder that results in several physical and developmental abnormalities. http://www.specialchild.com/archives/dz-010.html

Disorder Zone Archives Cornelia de Lange Syndrome Madalyn Gilchrist Ketchel Clements Introduction Cornelia de Lange syndrome (CdLS) is a disorder that results in several physical and developmental abnormalities. The cause of CdLS is unknown at this time, however, it is thought that the disorder may be of a genetic nature (possibly a faulty gene on chromosome 3). Most cases are sporadic, however, there has been documentation of affected siblings, which would suggest inheritance. It is said to occur in 1 in 10,000 to 1 in 30,000 live births and is found equally in males and females. Although this syndrome is considered rare, experts agree that it is likely underdiagnosed. CdLS was first described in 1916 by Dr. W. Brachmann and was later identified again by Dr. Cornelia de Lange, a Dutch pediatrician, in 1933. Both physicians described children with common symptoms and characteristics (as shown below). Features and Characteristics There are several physical and developmental characteristics that are associated with CdLS, however, not every individual has all the characteristics. The following is a list of the most common traits: Low birth weight (usually under 5 pounds) Delayed growth and small stature Developmental delay Limb differences (sometimes missing limbs or portions of limbs) Small head size (microcephaly) Thin eyebrows which typically meet at midline Long eyelashes Short upturned nose and thin downturned lips Long philtrum Excessive body hair

12. Cornelia De Lange Syndrome Rare / Orphan Diseases, cornelia de lange syndrome (CDLS) Guide picks. cornelia de lange syndrome Article describes the syndrome, its diagnosis, and treatment. http://rarediseases.about.com/cs/cdls/

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') About Rare / Orphan Diseases Home Essentials ... Rare cancers zau(256,152,145,'gob','http://z.about.com/5/ad/go.htm?gs='+gs,''); Is it a Rare Disease? Rare Diseases A - B Rare Diseases C - D Rare Diseases E - H ... Help zau(256,138,125,'el','http://z.about.com/0/ip/417/0.htm','');w(xb+xb); Stay Current Subscribe to the About Rare / Orphan Diseases newsletter. zau(256,152,100,'hs','http://z.about.com/5/ad/hs.htm?zIhsid=00',''); Search Rare / Orphan Diseases Cornelia de Lange Syndrome (CDLS) Guide picks Syndrome characterized by facial and upper limb malformations and behavioral problems. Cornelia de Lange Syndrome Article describes the syndrome, its diagnosis, and treatment. From the About.com Guide to Rare/Orphan Diseases. CdLS USA Foundation Site offers information, news, research, newsletter, and links. CdLS Online Support Group Site offers message board, chat, kids' email list, Spanish email list, facts, and links. NORD: Cornelia de Lange Syndrome Brief definition from the National Organization for Rare Disorders (U.S.). Topic Index email to a friend back to top Our Story ... User Agreement

13. Pediatric Database A definition of cornelia de lange syndrome, the epidemiology, history, clinical features, organ malformations, investigations and management. http://www.icondata.com/health/pedbase/files/CORNELIA.HTM

14. Cornelia De Lange Syndrome de Lange Syndrome information, national and international support groups, clinics with genetic counselors and geneticists de Lange syndrome. cornelia de lange syndrome, BrachmanDeLange. Cornelia http://www.kumc.edu/gec/support/cornelia.html

de Lange syndrome Cornelia de Lange syndrome, Brachman-DeLange Cornelia de Lange Syndrome Foundation 302 West Main Street, #100 Avon, CT 06001 Telephone: 800.223.8355 or 860.676.8166 Fax: 860.676.8337 E-mail: info@cdlsusa.org Web site: www.cdlsusa.org or www.cdlsoutreach.org/ CdLSWorld , international organizations Australasia (Australia, Malaysia, New Zealand, Philippines, Singapore and SE Asia) CdLS Association (Australasia), Inc. 159 Boddington Crescent Australian Capital Territory Kambah 2902 AUSTRALIA E-mail: pcrawfor@dynamite.com.au Phone: 02 62 31 6866 Web site: www.cdlsaus.org/ New South Wales / Capital Territory Coordinator 135 Princes Street Putney, New South Wales 2112 AUSTRALIA E-mail: jrollo@one.net.au Phone: 02 9809 0287 New Zealand 11 Winsomere Circle Westmere, Auckland 2 NEW ZEALAND E-mail: vernon@ptgroup.co.nz Phone: 09 378 0720 Malaysia and Singapore 20-25-2 Angkupuri Condominium Jalan 1/70C off Jalan Bukit Kiara 50480 Kuala Lampur MALAYSIA E-mail: mohdnor@simenet.com

15. Gene Discovered For Cornelia De Lange Syndrome, A Disabling Genetic Disease c.moreover.com/click/here.pl?x155365540 More results from c.moreover.com Special Child Disorder Zone Archives cornelia de lange syndrome cornelia de lange syndrome. Madalyn Gilchrist. cornelia de lange syndrome (CdLS) is a disorder that results in several physical and developmental abnormalities. http://c.moreover.com/click/here.pl?r155365540

16. HealthlinkUSA Cornelia De Lange Syndrome Links Finding cornelia de lange syndrome is a Click Away at 2020Search.com what you re looking for on%3A cornelia de lange syndrome%3F 2020Search will instantly provide you with http://www.healthlinkusa.com/cornelia_de_lange_syndrome.htm

17. Cornelia De Lange Syndrome - Information / Diagnosis / Treatment / Prevention home neurological disorders chromosomal cornelia de lange syndrome cornelia de lange syndrome. Information • Diagnosis • Treatment • Prevention. http://www.healthcyclopedia.com/neurological-disorders/chromosomal/cornelia-de-l

Home Health cyclopedia All Topics by Category The Good Health Search Engine Health Conditions A-Z Gurus ... chromosomal > cornelia de lange syndrome Cornelia De Lange Syndrome Information / Diagnosis / Treatment / Prevention External links (marked with an arrow ) open in a new window. This site is a web directory and does not offer medical advice. We cannot take responsibility for information found on listed sites. This Page Related Topics Medical Definition Health News Web Directory: Related Topics: Genetic Disorders Rare Disorders Medical Definition: University of Newcastle-upon-Tyne Medical Dictionary: "Cornelia de Lange syndrome" Health News: Search millions of published articles for news on Cornelia De Lange Syndrome Modern Medicine Aging The Ardell Wellness Report HealthFacts Medical Post Medical Update Men's Health and the National Women's Health Report Note: Subscription required to access the full text of articles. Web Directory: Baylee's Web Suite: Cornelia de Lange Syndrome Specially geared towards new parents, family and friends of CdLS children. Information about the disease as well as Baylee's personal progress. NORD - Cornelia de Lange Syndrome Offers the synonyms, a general discussion and further resources.

18. CdLS Online Support Group Copyright CdLS Online Support Group All rights reserved Contact us contact@cdlssupport.org Not affiliated with the cornelia de lange syndrome Foundation. http://www.cdls-support.org/

"What the caterpillar thinks is the end of the world ...the butterfly knows is only the beginning." CdLS-KIDS Stay connected! Join our email discussion list. CdLS-AMIGOS Se habla espanol. CdLS-SIBLINGS Email group just for siblings. CdLS-Remembered Support for those who have lost a loved one with CdLS. CHAT Get in on the fun with our weekly chats. MESSAGE BOARD New forum is here! Please visit and post your questions! CdLS FACTS Learn about CdLS. LINKS Links to CdLS home pages and other CdLS-related sites. NEW FAMILIES Letters of support for new CdLS families. INSPIRATION Stories and poems contributed by our members. MEMORIAL PAGE In loving memory of our CdLS angels. Parents sharing adaptive devices that work for their children w/CdLS. TEAM CdLS Raising awareness and funds for the CdLS Foundation. GUESTBOOK Please take a moment and sign our guestbook. Sign/View EMAIL Email us. GALLERY Photos of our kids. SUGGESTION BOX Got a suggestion, comment or question? Use this form! Contact us: contact@cdls-support.org Not affiliated with the Cornelia de Lange Syndrome Foundation Welcome to the Cornelia de Lange Syndrome (CdLS) Online Support Group . The group was started by several moms who met regularly online and realized how wonderful it was to have a convenient way of communicating. CdLS is rare enough that finding other parents in close proximity is not always feasible. Now, through this miracle of technology, we can connect with others who have much in common...wherever we may be in the world. We are no longer alone!

19. Discovery Of Gene For Cornelia De Lange Syndrome Discovery May Lead To Prenatal A team of researchers has discovered a gene for cornelia de lange syndrome, a disorder consisting of mental retardation, heart defects and a number of physical http://www.sciencedaily.com/releases/2004/05/040519063614.htm

Match: sort by: relevance date Free Services Subscribe by email RSS newsfeeds PDA-friendly format loc="/images/" A A A Find Jobs In: Healthcare Engineering Accounting College Contract / Freelance Customer Service Diversity Engineering Executive Healthcare Hospitality Human Resources Information Tech International Manufacturing Nonprofit Retail All Jobs by Job Type All Jobs by Industry Relocating? Visit: Moving Resources Moving Companies Mortgage Information Mortgage Calculator Real Estate Lookup Front Page Today's Digest Week in Review Email Updates ... Outdoor Living Source NIH/National Institute Of Child Health And Human Development Date Print this page Email to friend Discovery Of Gene For Cornelia De Lange Syndrome Discovery May Lead To Prenatal Test For Debilitating Disorder A team of researchers has discovered a gene for Cornelia de Lange Syndrome, a disorder consisting of mental retardation, heart defects and a number of physical abnormalities. The researchers were funded by the National Institute of Child Health and Human Development, one of the National Institutes of Health. What's Related Researchers At UT Southwestern Discover Link Between Gene In Rare Disorder And Growth Factor Progress In Mental Retardation Research New Insight Into Fragile X Syndrome: Scientists Identify Possible Link To RNAi related stories Related section: The researchers expect the discovery to speed the development of a prenatal genetic test for the syndrome. A similar test will also be developed to diagnose Cornelia de Lange Syndrome in young children suspected of having the disorder.

20. Cornelia De Lange Syndrome; Treatment, Prevention, Cure cornelia de lange syndromeSearch information from many of the best cornelia de lange syndrome health sites. Quickly find information http://www.healthlinkusa.com/content/82.html

Latest Health News Find Drug Information Health Calculators All Words Any Words A B C D ... Z Sunday, January 4, 2004 Alternative therapy struggles to bridge East-West divide Click here to read more Doctors are not following guidelines recommending flu and pneumonia vaccinations for hospitalized adults, leaving millions of elderly patients vulnerable to potentially deadly ailment Click here to read more A helping hand for uninsured; Agencies find ways to provide health care for area children Click here to read more The government has approved the first generic version of the acne drug, Accutane Click here to read more Gates to give India $100m for AIDS; Microsoft CEO begins controversy-laced trip to fight virus Click here to read more Allergies and Asthma Alternative Medicine Arthritis and Your Health ... Women's Health Wednesday June 02, 2004 Spina Bifida: Spina Bifida is a rare birth disorder, affecting approximately 1 in 12-1400 live births. Click here to learn more Craniosynostosis: Sagittal Synostosis...males are affected about three times as often as females. Click here to learn more Spinal Cord Injury: Acts of violence have now overtaken falls as the second most common source of spinal cord injury.

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