1. NOONAN SYNDROME : Contact A Family - For Families With Disabled Children: Inform A description of noonan syndrome, its inheritance patterns and prenatal diagnosing. http://www.cafamily.org.uk/Direct/n33.html

printer friendly NOONAN SYNDROME home how we can help medical information index of conditions ... how you can help Did you find this page helpful? yes no Noonan syndrome is a genetic condition which is very variable in degree and so mildly affected individuals may remain undiagnosed. Additionally the characteristics, especially facial, appear to change as the individual ages. Characteristics include: heart defects , the commonest being pulmonary valve stenosis; atrial septal defects and hypertrophic cardiomyopathy; facial features: ptosis (drooping eyelids); large downward slanting eyes; hypertelorism (widely spaced eyes), flat nasal bridge; short neck with or anterior rotations; short stature in correct proportion. Additional features may include: excess oedema at birth and slow weight gain; feeding difficulties with poor sucking and weaning and frequent and/or forceful vomiting in babies which may be assessed as failure to thrive; mild hearing loss; dental delay; elevated or depressed sternum;

2. The Noonan Syndrome Support Group Website Information about this organization as well the disease itself. Offers news, events, a survey, a newsletter and further resources. http://www.noonansyndrome.org/

Together, we can solve this puzzle. Enter Hello we are the parents of Gaelle (ASD, single ventricle, situs solitus, TGA, atresia, coarctation of the aorta). We live in Paris (France) and we are very so happy and honored to send you this award for your website because it was a pleasure visiting your wonderful site,and your story. Please link it back to http://perso.wanadoo.fr/association.solidarite.gaelle/ . For me this award is a bearer of peace and happiness, because I think that your Web site is the reflection of your soul. Have a nice day, Christian DAUMAL Wanda Robinson, wanda@noonansyndrome.org The Noonan Syndrome Support Group, Inc., P.O.Box 145 Upperco, MD 21155, USA 1-888-686-2224 within the USA or 410-374-5245 (Communication service is funded by the fund raising efforts of the Minnesota chapter of The Noonan Syndrome Support Group, Inc.) info@noonansyndrome.org

3. Noonan Syndrome Story of 6year-old Becky, with factsheet and resources. http://www.heather.flyer.co.uk/noonan.htm

Noonan Syndrome Please note that this site is no longer being updated - my new website is hnye.com Becky, now 6! Becky, aged 4 My interest in Noonan Syndrome (NS) began in 1995 when my daughter Rebecca was born. She had feeding problems, was sick nearly every time she was fed, and ended up being labelled a 'failure to thrive' baby. Investigations into this failure to thrive revealed that she also had congenital heart defects (pulmonary stenosis and hypertrophic cardiomyopathy), and a diagnosis of Noonan Syndrome was made. At the time we were given no information at all about NS, so I made it my aim to find out as much as I could about the condition - and much of what I learned is accessible via these pages. I also volunteered to become the UK Representative for The Noonan Syndrome Support Group , and you can get lots more information on NS from their website, The Birth Defects Foundation website, or by following the links below. Thankfully Becky is now a very happy and healthy little girl, her heart defects have improved dramatically, and she is doing everything you would expect a child of her age to do - so although a diagnosis of NS can be very daunting at first, there can be happy endings!!!

4. The GUCH Patients' Association - Noonan's Syndrome, By Michelle Ellis Account of her life with the disorder. http://www.guch.demon.co.uk/pe0010.htm

Home Personal Experiences Members Stories Noonan's Syndrome By Michelle Ellis I am almost 21 years old and was born in Brussels. I was a prem. baby.. born by caesarean at 33 weeks. I was born with a hole in my heart, mild PS (which I still have), ptosis, strabismus. They didn’t operate on my heart till I was 4 years old when they closed the ASD I had. I also had a series of operations for my squint and ptosis. The early years were very difficult naturally. I apparently was a very stubborn baby that would not eat and would be sick! I was bad with lumpy food as well (?!) Those first few years I was sick quite a lot with ear infections and tonsillitis, bronchitis etc. etc. I was also very short, and low weight was a problem for a short while. I find it hard to concentrate also and was bullied quite a lot. It was 2 years ago now that NS started to become a familiar term to me. I quickly found The Noonan Syndrome Support Group. I receive a great amount of support from this group and am a member of the ListServer. In October last year I attended the conference organised by this group. It was amazing! I met people like me, people who understood me. I shared laughs, tears of compassion and understanding and our hopes and fears for the future. The doctors really wanted to learn what WE had gone through as kids living with this little known disorder to help our kids now and the future. Dr Noonan was there and I talked to her! I never thought I'd be able to meet her, and here I was in the USA talking to THE Dr Noonan, who has tirelessly researched this disorder.

5. BDF Newlife - Birth Defects Children's Charity - Noonan Syndrome History of the Foundation's involvement with Noonan's. Printable booklet and newsletter. http://www.bdfcharity.co.uk/docs/family_patients_area/fp_noonan_1.htm

BDF Newlife has a long relationship with Noonan Syndrome Each year BDF runs an annual get together for families and professionals interested in the condition, where research and news is reviewed and disseminated. Families get to meet and relationships and support networks are established. Check our Events section for latest details. Through BDF Newlife, NS has gone from being the unknown condition to become one of the better recognised disorders. Not only has the research on NS benefited children and families but because it is a complex genetic disorder, information gained has also impacted on the knowledge of other syndromes, congenital heart disease, endocrine matters etc. BDF Newlife publishes a booklet on the condition that is freely available and is based upon its pioneering research. NS Internationally BDF Newlife is in contact with many small groups and families internationally who come together annually to exchange ideas and share experiences. Contact is welcome with any individual, family or professional concerned or interested in NS. Noonan Syndrome Booklet The free Noonan Syndrome booklet is available from the Publications page in Adobe Acrobat format or can be ordered in print form.

6. 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=Noonan Syndro

7. The Noonan Syndrome Support Group Website (Communication service is funded by the fund raising efforts of the Minnesota chapter of The noonan syndrome Support Group, Inc.) http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

8. Welcome Welcome to the Noonan Support Group (TNSSG). noonan syndrome is a condition which affects both children and adults. It is often associated with congenital http://www.noonansyndrome.org/home.html

Home Site Map Search Contact Us ... Next WELCOME TO OUR WORLD Traduzca? Traduisez? Übersetzen Sie? Tradurre? ... Our Families Updated 8-22-05 Updated 8-22-05 Updated 8-22-05 Updated 8-22-05 Updated 8-22-05 2005 Conference Pictures New Stars Spring News Letter Links NS Updated 8-22-05 Updated 8-22-05 March 2005 Updated 8-22-05 Welcome to the Noonan Support Group (TNSSG). Noonan Syndrome is a condition which affects both children and adults. It is often associated with congenital heart disease and short stature. It is believed that 1 in 1,000 to 1 in 2,500 children worldwide are born with this condition. Each day a child is born with the condition. It's possible that people carry the gene yet are undiagnosed. Once affected, their is a 50/50 chance of passing the gene on to one or more of their children. It can also occur sporadically, presumably due to a new mutation. Often called a "hidden" condition, the children affected may have no obvious casual signs to the onlooker, but the problems may be many and complex with no clinical test available. This is a genetic condition that can affect the heart, growth, blood clotting, mental and physical development. Affected individuals may have behavior problems, learning difficulties and many other anomalies. Noonan Syndrome is one of the most common of those conditions associated with congenital heart abnormality. Still its exact cause remains unknown.....

9. EMedicine - Noonan Syndrome : Article By Jennifer Ibrahim, MD Thorough summary of history, diagnosis, and treatment. http://www.emedicine.com/PED/topic1616.htm

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Advanced Search Consumer Health Link to this site Back to: eMedicine Specialties Pediatrics Genetics And Metabolic Disease Noonan Syndrome Last Updated: October 30, 2002 Rate this Article Email to a Colleague Synonyms and related keywords: hypertelorism, down-slanting eyes, webbed neck, congenital heart disease AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Jennifer Ibrahim, MD , Fellow, Department of Pediatrics, Division of Genetics, Children's Hospital of New Jersey and Mount Sinai School of Medicine Coauthor(s): Margaret McGovern, MD, PhD , Vice Chair, Associate Professor, Department of Human Genetics, Mount Sinai School of Medicine Jennifer Ibrahim, MD, is a member of the following medical societies: American Society of Human Genetics Editor(s): Elaine H Zackai, MD , Director of Clinical Genetics Center, Professor of Pediatrics, Department of Pediatrics, Division of Human Genetics and Molecular Biology, University of Pennsylvania, Children's Hospital of Philadelphia; Robert Konop, PharmD

10. Welcome TALK TO PEOPLE WHO ARE MOST AFFECTED BY noonan syndrome We operate a list service (discussion forum). http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

11. MedlinePlus Medical Encyclopedia: Noonan Syndrome noonan syndrome is a genetic disorder that causes abnormal development of multiple The fact that some children do not have a parent with noonan syndrome http://www.nlm.nih.gov/medlineplus/ency/article/001656.htm

@import url(/medlineplus/images/advanced.css); Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Noonan syndrome Contents of this page: Illustrations Definition Causes, incidence, and risk factors Symptoms ... Prevention Illustrations Pectus excavatum Definition Return to top Noonan syndrome is a genetic disorder that causes abnormal development of multiple parts of the body. In particular there is webbing of the neck and different shapes to the chest that are reminiscent of Turner syndrome, hence the former name Turner-like syndrome. Causes, incidence, and risk factors Return to top Noonan syndrome can be inherited in an autosomal dominant manner. It affects at least 1 in 2,500 children. The fact that some children do not have a parent with Noonan syndrome likely reflects sporadic inheritance, that is, the presumed occurrence of a new mutation. The first specific gene that causes Noonan syndrome, called PTPN11, was discovered in 2001. It is expected that other genes will be discovered that cause Noonan syndrome. Frequently-seen abnormalities include webbing of the neck, changes in the sternum (usually a sunken chest called pectus excavatum), facial abnormalities, and congenital

12. Noonan Syndrome noonan syndrome http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

13. Www.nlm.nih.gov/cgi/mesh/2K/MB_cgi?term=Noonan+Syn eMedicine noonan syndrome Article by Jennifer Ibrahim, MDnoonan syndrome - noonan syndrome was first recognized as a unique entity in 1963 when Noonan and Ehmke described a series of patients with unusual facies http://www.nlm.nih.gov/cgi/mesh/2K/MB_cgi?term=Noonan Syndrome

14. Noonan Syndrome / Family Village Library Who to Contact Where to Go to Chat with Others Learn More About It Web Sites Search Google for "noonan syndrome" http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

15. Noonan Syndrome noonan syndrome. The noonan syndrome Support Group Website noonan syndrome Who to Contact Where to Go to Chat with Others Learn More About It. http://www.ability.org.uk/Noonan_Syndrome.html

"see the ability, not the disability" You to can help support the Ability Project by: Our Aims ... Z Noonan Syndrome The Noonan Syndrome Support Group Website Noonan Syndrome - Who to Contact Where to Go to Chat with Others Learn More About It. noonan syndrome OutLook Magazine's Disability Web: Resources: Mailing Lists: Directory: NOONAN-SYNDROME List: Noonan's Syndrome Noonan syndrome and children ... Webmaster . Site Design by Ability "see the ability, not the disability" Acknowledgments

16. Martha Kate Downey - Home Page Support and information about Asperger's Syndrome, noonan syndrome, autism, and other disorders. http://mkdowney.com

Welcome Search this site powered by FreeFind Martha Kate Downey - Books by MK author, speaker, educator ... but mainly just Mom What's up now ? Learn more about... BOOKS, BOOKS, BOOKS What's up now ? Watch for exciting new changes in the Come read with me program! New home, new material, new teachers! Come read with me is now part of Megan's Crossing. Its new name Megan Reads has a new home and extended hours! Interested in reading with us or volunteering as a tutor? Give us a call or drop me a line! If you've ever wanted to crawl in the closet with an OREO...Second Edition" just arrived in Texas in its 5th printing! Order a signed copy! To order Travelling Grace, What Do I Do About Hitting?!, TAP DANCING in the night, If you've ever wanted to crawl in the closet with an OREO... or The People in a Girl's Life go to Books by MK amazon.com , etc. Steps to Support for All Still going strong after the regularly scheduled legislative session was completed. We continue to work togetherfor all those who receive services through the Department of Aging and Disability Services. Join us! Next general meeting early fall 2005 Euless, Texas Writing, writing, writing...New book

17. Noonan Syndrome noonan syndrome Fact Sheet by I.B.I.S. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

18. Noonan Syndrome The noonan syndrome Support Group Website. noonan syndrome Who to Contact Where to Go to Chat with Others Learn More About It. noonan syndrome http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

19. Noonan Syndrome The noonan syndrome Support Group, Inc., (TNSSG, noonan syndrome Society 1278 Pine Ave San Jose, CA 95125 Phone (408) 7235188 Contact Susan http://www.kumc.edu/gec/support/noonan.html

Noonan syndrome The Noonan Syndrome Support Group, Inc. , (TNSSG, Inc.) P.O.Box 145 Upperco, MD 21155, USA 1-888-686-2224 within the USA or 410-374-5345 E-mail: info@noonansyndrome.org or wandar@bellatlantic.net (Wanda Robinson) Web site: http://www.noonansyndrome.org Listserv: send e-mail to: listserv@home.ease.lsoft.com with "Subscribe Noonan-Syndrome" Noonan Syndrome Society 1278 Pine Ave San Jose, CA 95125 Phone: (408) 723-5188 Contact: Susan Espinoza Noonan Syndrome Society Unit 5 Brindley Business Park, Chaseside Drive Cannock, Staffs WS11 1GD Tel. / Fax. 01922 415500 Also See: National organizations information on genetic conditions or birth defects Noonan Syndrome Pamphlet, published with input from Division of Genetics, University of Kentucky, Lexington, fact sheet discusses etiology and clinical features. Copies available from department. To locate a genetic counselor or clinical geneticist in your area: Professional Genetics Societies Genetic clinics, centers, departments Genetic Societies Clinical Resources ... Search Genetics Education Center Debra Collins, M.S. CGC

20. NOONAN SYNDROME Contact A Family - For Families With Disabled A description of noonan syndrome, its inheritance patterns and prenatal diagnosing. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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