21. Rett Syndrome Links rett syndrome Links. Similar Disabilities Angelman Syndrome This condition is very similar to rett syndrome, but can appear in boys, too http://www.bundlings.com/rslinks.htm

selectCSS(document.URL,1); Rett Syndrome Links Rett Syndrome: Main RS Site Index Calorie Boosters Claire's Story ... Tips Rett Syndrome Links Similar Disabilities Angelman Syndrome This condition is very similar to Rett Syndrome, but can appear in boys, too Autism Some girls with Rett Syndrome originally had this diagnosis Cerebral Palsy Another common diagnosis for our girls Sensory Integration Dysfunction Some of our daughters started out with this diagnosis when they were very young Family Links Family Village Internet Resources for Special Children Our Kids Symptom Links Apraxia Ataxia Bruxism (Teeth Grinding) Infant Reflux ... Scoliosis Technology Links AbleNet, Inc. Edmark Corporation Enabling Devices Judy Lynn Software Toy Links Toys for Special Children Wisconsin First Step List of Toy Catalogs Adapted Clothing and Accessories Accessible Threads Adaptations by Adrian Snuggle Wraps (Arm Restraints) Special Clothes for Special Children ... Wearable Clothing Rett Syndrome Associations Worldwide Associação Nacional De Pais E Amigos Rett (Portugal) Associazione Italiana Sindrome di Rett Australian Rett Syndrome Association Belgian Rett Syndrome Association ... United Kingdom Rett Syndrome Association document.write(''); Rett Syndrome: Main RS Site Index Calorie Boosters Claire's Story ... Tips

22. SCEIC....Detecting Flash Plug-In A nationally recognized notfor-profit pre-school and therapeutic center for families and children with Down syndrome, William's syndrome, rett syndrome, Cerebral palsy, Autism, P-4 Deletion syndrome, PDD and Apert syndrome. http://www.sceic.com/

23. Rett Syndrome Association (UK) The rett syndrome Association UK, a registered charity, is dedicated to the support of girls and women, together with their families and carers http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

24. WE MOVE - Rett Syndrome rett syndrome (RS) is a progressive neurodevelopmental disorder that occurs almost exclusively in females. The disorder was originally described by Dr. http://www.wemove.org/rett/

WE MOVE 204 West 84th Street New York, NY 10024 E-mail: wemove@wemove.org Rett Syndrome Rett Syndrome Information for Patients and Caregivers (see table of contents below) Rett Syndrome Information for Medical Professionals at MDVU Rett Syndrome Information for Patients and Caregivers Table of Contents Overview of Rett Syndrome Symptoms/Findings/Clinical Course Epidemiology Causes/Genetics ... References WE MOVE makes every effort to present medical information that is up-to-date and accurate. The material provided has undergone rigorous medical review. Information regarding the authors, editors, publisher, and medical reviewers of this material of the WE MOVE Web site is listed below. Medical science is constantly changing. Therefore, the authors, editors, and publisher do not warrant that the information in this text is complete, nor are they responsible for omissions or errors in the text or for the results of the use of this information. This information does not replace consultation with a physician. All medical procedures, drug doses, indications, and contraindications should be discussed with your personal physician. Medical Editor: Joy B. Leffler, NASW, AMIA

25. Rett Syndrome Europe Interactive Map Working together, rett syndrome Europe supports girls and women, their families and carers, disabled by this complex neurological disorder. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

26. WE MOVE Discussion Forum: Rett Syndrome? My name is Kelsey and I am doing a term paper on rett syndrome. My daughter is 9 years old and has rett syndrome. Love to help you. Thanks! http://www.wemove.org/ubb/ultimatebb.php?/topic/6/6.html

27. Neurology - Texas Children's Hospital Attached to the Texas Children's Hospital, Houston, USA. Includes details of specialist clinics for children with rett syndrome, epilepsy, sleep disorders and developmental problems. http://www.texaschildrenshospital.org/carecenters/Neuro/Neurology/Default.aspx

search ALL or a topic Medical Staff News Center HOME ABOUT TEXAS CHILDREN'S PATIENT CARE CENTERS FIND A DOCTOR ... Kids Courageous PATIENT CARE CENTERS Blue Bird Circle Clinic for Pediatric Neurology at Texas Children’s Hospital Frequently referred clinics Attention problems Brachial Plexus Neurofibromatosis Neurophysiology (neurological testing) ... Physical medicine and rehabilitation The Blue Bird Circle Clinic for Pediatric Neurology at Texas Children's Hospital specializes in the diagnosis, treatment and follow-up care of neurological disorders in children. These include epilepsy, motor problems, seizures, static encephalopathies, cerebral palsy, developmental delay, headaches, brain tumors, congenital malformations, weakness, movement disorders and degenerative diseases. Due to the complex nature of neurological conditions, this clinic frequently refers patients to a variety of other clinics within Texas Children's Hospital.

28. Sndrome De Rett En Espaa Informaci n a cerca del S ndrome de Rett en castellano realizada por las asociaciones Catalana y Valenciana de dicha enfermedad. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

29. Rett Syndrome Europe Interactive Map Working together, rett syndrome Europe supports girls and women, their families and carers, disabled by this complex neurological disorder. http://www.rettsyndrome.com/

RETT SYNDROME EUROPE Rett Syndrome is a complex neurological disorder which occurs mainly in females and affects them throughout their lives. Sufferers are profoundly and multiply disabled and totally dependent on others for their needs. This site is sponsored by European support groups. It is dedicated to the support of such girls and women, their families and carers. CLICK ON THE COUNTRY OF YOUR CHOICE notice board minutes contact statutes ... help last update: June 2005 webmaster: johan delaere NEW ! PRAGUE CONFERENCE SEPTEMBER PROGRAMME REGISTRATION FORM

30. Rett Syndrome / Family Village Library A comprehensive worldwide organization dedicated to rett syndrome. The International rett syndrome Association disseminates timely, accurate, http://www.familyvillage.wisc.edu/lib_rett.htm

Rett Syndrome Who to Contact Where to Go to Chat with Others Personal Accounts Learn More About It ... Search Google for "Rett Syndrome" Who to Contact International Rett Syndrome Association 9121 Piscataway Rd Suite 2B Clinton MD 20735 301-856-3336 (Fax) E-mail: irsa@rettsyndrome.org Web: http://www.rettsyndrome.org/ A comprehensive worldwide organization dedicated to Rett syndrome. The International Rett Syndrome Association disseminates timely, accurate, objective information on Rett syndrome throughout the world to people who need information and resources and to researchers who can make a difference and provides books and materials, annual conferences, regional seminars, quarterly newsletters, a website with more than 2 billion hits last year, RettNet, a toll free help line, a listening ear and a caring heart so you know you are not alone Where to Go to Chat with Others RETT Net An ongoing discussion for Doctors, Researchers and parents of Rett Syndrome girls. Club Rett Our Mailing List is for ADULTS who have a Rett Syndrome Angel in their life. It is a place to share ANYTHING you want to talk about. Rett Syndrome Parents A place for Rett Syndrome Parents to talk about- discuss and share thoughts- idea's and questions about Rett Syndrome.

31. Rett Beyond saying that rett syndrome is a “neurologic disorder”, A girl with classic rett syndrome appears normal to her parents for most of the first year http://home.coqui.net/myrna/rett.htm

Rett Syndrome In the spring of 1965, Andreas Rett observed two young girls sitting on their mothers’ laps in his waiting room. Like mirror images of each other, they were petite and profoundly disabled and were wringing their hands together incessantly. After searching hi files, Dr. Rett found six other girls with a similar clinical picture and wrote the first description of the syndrome that now bears his name. Beyond saying that Rett syndrome is a “neurologic disorder”, there is little agreement as to whether to classify it as a “neurodegenerative disease” or a “mental retardation syndrome”. There is progression of symptoms, especially motor regression, over the life span, but whether this is due to ongoing degeneration or to secondary sequelae as in cerebral palsy or other neurobiological factors is not clear. It is also not clear if it is a genetic disorder. CLINICAL PRESENTATION. A girl with classic Rett syndrome appears normal to her parents for most of the first year of life. She may begin walking or may have mildly delayed motor milestones. Her social development appears normal, and she may begin to use and understand language. Sometime between 1 and 2 years, she experiences a regression of these skills. She stops playing with toys. She stops responding to the spoken word and stops using the few single words she has learned. She becomes withdrawn and loses interest in social interaction. She may stop walking. Purposeful hand use is replaced by stereotypic hand movements. The lost developmental skills are never recovered, and she moves through at a level of profound mental retardation.

32. Rett Syndrome Irma Penner's book, The Right to BelongThe Story of Yvonne, describes the importance of community and school integration for children with severe disabilities. http://www3.nb.sympatico.ca/ipenner/rs.html

Experiences with RS Perhaps some of our experiences will be helpful to other parents. Yvonne Fredericton, New Brunswick, Canada We will add information as time and energy permits. For now we have included a page on school integration (taken from Irma's book, #1 below) and a page on allergies and behavior. T HE R IGHT TO ... The Story of Yvonne by Irma Penner Integrated at Last Chapter 15 from Irma's book Eating Disorder, Constipation and Food Allergies - December, 2000 E-mail: ipenner@nb.sympatico.ca Phone: (506) 452-2136 Back to: Penner Home Page Link to Rett Syndrome Association: International Rett Syndrome Association http://www.rettsyndrome.org Links to other supportive organizations: Association for Community Living http://www.cacl.ca/ You are visitor no.: since Dec 7, 2000 If you have any comments or questions about this website, please contact Irma Penner ipenner@nb.sympatico.ca Updated Dec 20, 2003

33. MECP2 Data Retrieval Searchable database of known and novel MECP2 diseasecausing mutations and polymorphisms. From the International rett syndrome Association. http://mecp2.chw.edu.au/

RettBASE: IRSA MECP2 Variation Database Welcome We welcome you to the web-based IRSA Gene Variation Database (RettBASE). This database has been constructed by merging mutation and polymorphism data from the published literature pertaining to Rett syndrome and related clinical disorders, and by incorporating unpublished mutation and polymorphism data that have been submitted directly to us. RettBASE is updated on a very frequent basis manually by our curators to ensure the validity of the data being sent to us. A search engine has been constructed allowing you to perform searches of varying complexity, to obtain information relevant to your research or clinical questions. We invite you to: Browse mutation and polymorphism list for the sequence variation of your interest Perform simple or complex searches using our Boolean-based search engine Submit your unpublished sequence variation data by one of several means Alert us to published sequence variation data which we have not yet included Offer suggestions as to how we could enhance RettBASE to better meet your needs Acknowledgements Initial construction and maintenance of RettBASE could not have been possible without the very generous financial support of the International Rett Syndrome Association We would also like to acknowledge the New South Wales Rett Syndrome Association and the Rett Syndrome Australian Research Fund for their generous support of the NSW Rett Syndrome Research Team at the Children's Hospital at Westmead.

34. Australian Rett Syndrome Study eMedicine Pervasive Developmental Disorder rett syndrome Pervasive Developmental Disorder rett syndrome - rett syndrome (RS) is a neurologic disorder that affects many other systems. Internationally recognized in http://www.ichr.uwa.edu.au/rett/aussierett/

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35. NACD :: The National Association For Child Development The National Academy for Child Development, Inc. is an international organization of parents and professionals dedicated to helping children and adults reach their full potential. The over 15,000 clients served by NACD have come to us with labels including Learning Disabled, Dyslexic, Distractible, ADD, ADHD, Hyperactive, Down Syndrome, Fetal Alcohol Syndrome, Williams Syndrome, Tourettes Syndrome, rett syndrome, Fragile X, Developmentally Delayed, PDD, Autistic, Cerebral Palsy, Brain Injured, Comatose, Retarded, Minimal Brain Dysfunction, Normal, Accelerated and Gifted. http://www.nacd.org

549 25th Street Ogden, Utah 84401-2422 USA Phone: (801) 621-8606 Fax: (801) 621-8389 Send us your comments You're using an outdated browser. To view this content in a seperate window, click here.

36. IRSC - Neurological Disorders, Rett Syndrome The Internet Resources for Special Children (IRSC) Global disABILITY resource is dedicated to communicating information relating to the needs of children http://www.irsc.org:8080/irsc/irscmain.nsf/sub?readform&cat=Neurological Disorde

37. RETT SYNDROME rett syndrome, research index site with links for disability users, 1000 s of search engines and with live java games, chat s, kids internet, irc, jobs, http://www.ability.org.uk/rett.html

"see the ability, not the disability" You to can help support the Ability Project by: Our Aims ... Z RETT SYNDROME International Rett Syndrome Association Home page Rett Syndrome Webmaster . Site Design by Ability "see the ability, not the disability" Acknowledgments

38. HONselect - Rett Syndrome Rett s Disorder Rett s Syndrome - Autism Dementia Ataxia Loss of Purposeful Hand Use Syndrome. Français, Syndrome de Rett, - Rett, syndrome http://www.hon.ch/HONselect/RareDiseases/C10.574.500.775.html

List of rare diseases: English Deutsch Language: MeSH term: Accepted terms: English: Rett Syndrome - Autism-Dementia-Ataxia-Loss of Purposeful Hand Use Syndrome - Cerebroatrophic Hyperammonemia - Rett Disorder - Rett's Disorder - Rett's Syndrome - Autism Dementia Ataxia Loss of Purposeful Hand Use Syndrome Français: Syndrome de Rett - Rett, syndrome Deutsch: Rett-Syndrom - Hirnatrophische Hyperammonämie - Syndrom mit Autismus, Demenz, Alexie und Verlust von zweckmäßigen Handbewegungen Español: Síndrome de Rett - Autismo, Demencia, Ataxia y Pérdida Intencionada del Uso de la Mano - Hiperamonemia Cerebroatrófica Português: Síndrome de Rett - Hiperamonemia Cerebroatrófica - Síndrome de Autismo-Demência-Ataxia-Perda do Uso Apropriado da Mão HONselect ressources Definition: Yes Articles: Yes Images: No News: No Conferences: No Clinical trials: Yes Web sites: English Yes Français Yes Deutsch Yes Español No Português Yes Home About us Site map ... Contact http://www.hon.ch/HONselect/RareDiseases/C10.574.500.775.html Last modified: Wed May 18 2005

39. Rett Angels rett syndrome forum and online support group sharing personal stories and information. http://www.rettangels.org

Sunday - September 25, 2005 Guest Book About Rett Syndrome Rett Syndrome (RS) is a neurodevelopmental disorder believed to affect 1 in 10,000 female births (rarely seen in males). It is named for Dr. Andreas Rett, an Austrian physician who identified the syndrome in 1966, although it remained unknown in the United States until 1983. Symptoms: Children with Rett Syndrome appear to develop normally until 6 to 18 months of age. They then enter a period of regression, losing speech and hand skills they had acquired. Most children develop seizures, repetitive hand movements, irregular breathing and motor-control problems. * A slowing of the rate of head growth also becomes apparent. Most researchers agree that RS is a developmental disorder rather than a progressive, degenerative disorder. The girls can live to adulthood, but most never regain the ability to use their hands or to speak. Cause In 1999, a research team led by Dr. Huda Y. Zoghbi of the Howard Hughes Medical Institute and Houston’s Baylor College of Medicine identified the cause of Rett Syndrome as a defect in the MECP2 gene on the X chromosome. RS is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay. Genetic testing is now available to confirm the diagnosis. *Not every child with RS displays all of the symptoms, and individual symptoms may vary in severity.

40. GeneReviews: Rett Syndrome Your browser does not support HTML frames so you must view rett syndrome in a slightly less readable form. Please follow this link to do so. http://www.genetests.org/query?dz=rett

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