21. Genetic Links PAGER info on gastroesophageal reflux, sticklers syndrome, GeneticSyndrome Support Groups online. Human Genome Project Information, http://www.nt.net/~a815/links.htm

Related Genetic Links CHROMOSOME SPECIFIC: (HUGO sites offer links to related chromosome support groups) HUGO Chromosome 1 HUGO Chromosome 2 Hugo Chromosome 3 Chromosome 3 Deletion Registry ... 11Q Europe WAGR Syndrome/Aniridia network "Reaching Out" newsletter c/o Annie Prusakiewicz 2063 Regina Lincoln Park, MI 48146 Email: TheMooZoo@aol.com HUGO Chromosome 12 HUGO Chromosome 13 Support organization for Trisomy 13, 18 and Related Disorders ... Sanger Center. Studying Chromosome 22 HUGO Chromosome X HUGO Chromosome Y MISCELLANEOUS GENETIC LINKS Canadian Directory of Genetic Support Groups Chromosome Help Station Rainbow Families, a site that offers a great e-mail list for families who have children with trisomies Chromosome Deletion Outreach ... Genetic Alliance Helps new groups form, and directs you to appropriate support groups National Organization for Rare Disorders Useful, searchable database of rare disorders. Also offers parent matching registry

22. MHE Coalition Internet Resource Library Table Of Contents MARFAN’S SYNDROME, MULTIPLE SCLEROSIS,/OSTEONECROSIS, PARKINSON DISEASE, RESTLESSLEG SYNDROME, SHINGLES, sticklers syndrome, SYNOVIAL CHONDROMATOSIS, TURNER http://www.geocities.com/mhecoalition/Internet_Resource_Library_TofC.html

THE MHE COALITION Internet Resource Library MHE/HME SUPPORT GROUPS MHE SYNONYMS AND RELATED TERMS COMPUTER TUTORIALS SEARCH ENGINES MEDICAL SEARCH ENGINES A – G, H – L M – Z MEDICAL REFERENCE ACRONYM / ABBREVIATIONS, ATLASES, COURSE, DICTIONARIES, ENCYCLOPEDIAS, FULL TEXT, GLOSSARIES, GUIDES, HANDBOOKS, JOURNALS, LIBRARIES, MANUALS, NEWS, TERMS, THESAURUS, TRANSCRIPTS, TRANSULATORS, TEXTBOOKS, VIDEO MEDICAL DOCTOR FIND IN COUNTRIES - SEARCH ENGINES, FIND – IN USA - SEARCH ENGINES, CHOOSING HEALTH CARE SPECIALISTS, INTERVIEWING A HEALTH CARE PROVIDER, TALKING TO YOU DOCTOR CHIROPRACTOR, FAMILY DOCTOR, OSTEOPATH, PEDIATRICAN, PHYSICIAN, PHYCHIATRIST, SPORTS MEDICINE DOCTOR, SURGEON, THEAPIST UNDERSTANDING HEALTHCARE SPECIALISTS DOCTOR, ORTHIPAEDICS, ONOCOLOGY, PEDIATRIC ORTHOPAEDICS, PHYSIATRIST SPORTS MEDICINE, SURGEON VERIFY CREDENTIALS DOCTOR - ORGANIZATIONS ACADEMIES, ASSOCIATIONS, COLLEGES, SOCIETIES HOSPITAL CHOOSING A HOSPITAL, FIND IN – COUNTRIES, FIND IN – USA – SEARCH ENGINES, TRANSPORT HEALTHCARE GENERAL HEALTH COVERAGE CHOOSING ORGANIZATIONS ORGANIZATIONS, GOVERNMENT RELATED, MISC.

23. Macular Degeneration, Retinitis Pigmentosa, Stargardt, Usher Syndrome : : Founda degenerative diseases such as retinitis pigmentosa (RP), GoldmanFavre vitreoretinaldystrophy, Wagner's vitreoretinal dystrophy, and sticklers syndrome. http://www.blindness.org/visiondisorders/causes.asp?type=12

24. Syndromes Which Often Result In Combined Vision And Hearing Loss sticklers syndrome often has hip dislocations associated with it. Knowingthis, there may be a need to restrict some physical activities http://www.tsbvi.edu/Outreach/seehear/archive/syndromes.html

Return to Archive Syndromes Which Often Result in Combined Vision and Hearing Loss by Kate Moss, Family Training Specialist, TSBVI Outreach Usher Syndrome is one disorder that comes to mind readily for professionals in both the field of vision and hearing when they think of syndromes which result in dual sensory impairment or deaf-blindness. However, there are many syndromes that have both vision and hearing impairment as part of the conditions that define the syndrome. It is important to be aware of these conditions, since one of the sensory disabilities is often times more evident than the other. This situation makes it easy to overlook the impact of the combined vision and hearing loss. Below some of the more common syndromes, which can manifest with both vision and hearing loss, are described. If you are interested in obtaining more detailed information about any of these conditions, you may contact: National Organization for Rare Disorders P.O. Box 8923 New Fairfield, CT 06812-1783 Most of the information about these syndromes comes from reports provided by NORD. The exception is the information on Congenital Rubella Syndrome which comes from a booklet, "Congenital Rubella Syndrome: Health Care Challenges" written by Dr. Steven Parker from Boston University School of Medicine in collaboration with Perkins School for the Blind, Helen Keller National Center and St. Luke's-Roosevelt Hospital. This publication is available through Perkins School for the Blind.

25. University Of Dundee: Press Office Media Guide 2002 Directory Of Experts (News) PalateParticular interest in a range of craniofacial anomalies such as TreacherCollins Syndrome, Van der Woude Syndrome, sticklers syndrome, Binders Syndrome http://www.dundee.ac.uk/pressoffice/mediaguide02/staff/staffm/petermossey.htm

Dr Peter Mossey Department/School: Dental School - Unit of Dental and Oral Health Expertise: Genetics-PhD Thesis: "An investigation of heredity in the aetiology and pathogenesis of cleft palate and of cleft lip and palate". University of Glasgow 1994 ongoing research into genetics and gene/environment interaction in the aetiology and pathogenesis of craniofacial anomalies, in particular, cleft lip and palate. Orthodontics:Clinical Orthodontist, with particular interest in craniofacial growth and development and genetics of dental anomalies such as hypodontia, and of the hereditary influences on development of malocclusion. Also special interest in the quality of care for patients with craniofacial anomalies, in particular, cleft lip and palate. Cleft Lip and Palate:Particular interest in a range of craniofacial anomalies such as Treacher Collins Syndrome, Van der Woude Syndrome, Sticklers Syndrome, Binders Syndrome and Pierre Robin anomaly. However, much of my research is dedicated to the aetiology and pathogenesis of cleft lip and palate. Tristan da Cunha:Dundee University Dental School has won the contract to provide dental care for the inhabitants of the remote island of Tristan da Cunha. This has provided a unique research opportunity in that this enclosed community have a unique gene pool and because of inter-marriage can for certain genetic purposes be regarded as one large pedigree. The high prevalence of certain diseases on the island such as asthma have led to genetic investigations on the island and, in the course of clinical dental treatment, it is possible to collect information on dental caries and periodontal health of the islanders. Similar information has been collected in the previous dental health surveys and therefore longitudinal studies to examine certain conditions will be possible.

26. Links Craniosynostosis American Association of Neurosurgery. Ear Infection / Ear TubeEustachian tube dysfunction. sticklers syndrome Sticklers Involved People (SIP). http://www.chocraniofacial.org/webpages/links.htm

Quick Index After Surgery Information Alveolar Cleft Baby Panel Clinic Before Surgery Information Blender Recipes Blenderized Child Diet Blenderized Infant Diet Blood Donation Cancelling an Appointment Cleft Lip Cleft Palate Clinic Hours Clinic Types Contacting the Office Craniosynostosis Directions to Hospital Directions to the Clinic Ear Infections Ear Tubes Full Panel Clinic Glossary Insurance Links Long Term Follow Up Clinic Maxillofacial Panel Clinic Philosophy Positional Plagiocephaly Scheduling an Appointment Surgery Day Information Screening Clinic Staff List Wednesday Clinic To dowload the file on the right in a printable form, you need the free Children's Hospital Oakland Web Site by InterDoctor.com Site last modified 12/2002 Links Please contact us if you can suggest additional links. Children's Hospital Oakland (CHO) makes no judement or warranty with respect to the accuracy, timeliness, or safety of the content of Internet sites to which these pages link and takes no responsibility, therefore. A link to a site outside of CHO is not an endorsement of the site, its content, or its sponsoring organization. Medical Topic Team Member Craniofacial Genetics and Disorder Database National Institute of Dental and Craniofacial Research Robert Wesman, M.D., Ear, Nose, Throat Surgery

27. ICan ONLINE - Shannon Walker of Health (NIH) with a nonspecific genetic connective tissue disorder, classifiedin the area of disorders including sticklers syndrome, EhlersDanlos syndrome http://www.ican.com/news/fullpage.cfm/articleid/D3C3FB41-235E-45B7-AF76421C5E0A4

Self-awareness Cope with emotions Grow stronger Spirituality ... FAQ's CHANNELS Home Automotive Employment Independence ... Travel RESOURCES Conditions Library Message board Feedback Events ... Search iCan! THE LEADING DISABILITY COMMUNITY AOL KEYWORD: iCan iCan! BUSINESS RESOURCES Corporate Services Buy The Heidi Report Free Services Home ... Self-Discovery Shannon Walker March 9, 2001 Shannon Walker has been diagnosed at the National Institutes of Health (NIH) with a nonspecific genetic connective tissue disorder, classified in the area of disorders including Sticklers syndrome, Ehlers-Danlos syndrome and Marfans syndrome. She hopes that her poems and writings about her experiences will help others in their journey toward living with their disabilities and/or chronic pain. How can I? By Shannon Walker How can I rebuild my life torn down by doubt and pain, my dearest joys, desires, and hopes eclipsed by illness' reign? How can I let go of the past when loss so raw and deep, haunts and taunts me with what was

28. Resources - Guidance Inventory (District Office) Disorders; Speech/Language Disorders; sticklers syndrome; TourettesSyndrome; Williams Syndrome. DIVORCE (Mary's Office). The Boys Girls http://www.k12.nf.ca/vista/resources/inventory/d.html

Back Resource Index Guidance Inventory Index Home Guidance Inventory (District Office) D Developmental Delay DEGRASSI TALKS: (Derek's Office) Sexuality Sex Depression Abuse DEPARTMENT OF EDUCATION DOCUMENTS (Mary's Office) Special Matters Atlantic Canada Framework for Essential Graduation Learnings in Schools Student Drug Use Survey 1996 Guidelines for the Development and Delivery of Guidance Services Educational Indicators Report of the Community ‘Charting the Course' Performance and Accountability Reforms: A District Awareness Initiative (Move to School Development) Draft Handbook for Intermediate Grades R.C. School Board for St. John's - Junior High Reporting Procedures Handbook NLTA Code of Ethics DISCIPLINE: (Derek's Office) Books: Effective Discipline Discipline With Dignity DISORDERS/SYNDROMES (Mary's Office) Attention Deficit Disorder Central Auditory Processing Disorders Oppositional - Defiant - Disorder PDD/Autism Fetal Alcohol Syndrome Schizophrenic Sleep Disorders Speech/Language Disorders Sticklers Syndrome Tourettes Syndrome Williams Syndrome DIVORCE (Mary's Office) Custody Divorce Single Parents DIVORCE: (Derek's Office) Books: Helping Students Cope With Divorce Children of Divorce Programs: Working Out Divorce Book 1: My Parents are Getting a Divorce Working Out Divorce Book 2: I Am Getting a Divorce Working Out Divorce Book 3: Helping My Child Understand Divorce Working Out Divorce Book 4: Counselling Children of Divorce Articles: Does Joint Custody Work for Kids Blended Families Single Dad DOWN SYNDROME (Mary's Office)

29. CleftPALS QLD INC. Links Page Sticklers Website. sticklers syndrome is related to Piere Robin Sequence and thatin turn can be related to cleft palate. Personal Web Sites. Born to be Cleft ). http://homepage.powerup.com.au/~cleftpal/links.htm

Organizations' Web Sites WideSmiles Based in America and is one of the most comprehensive cleft lip and palate sites that has been found on the net. CleftPALS National (AUS) Headquarters The National Body of CleftPALS for all other states of Australia. Has contacts for all states and some useful information sheets. Sticklers Website Sticklers syndrome is related to Piere Robin Sequence and that in turn can be related to cleft palate. Personal Web Sites Born to be Cleft :) WebSite run by Kim, 26, who was born with a unilateral cleft lip (which means just being cleft under one nostril), and bilateral cleft palate (no palate at all). Greg and Catherine's Cleft Palate site Professionals Web Sites Dr Paul Allison ENT site Site run by ENT Surgeon Dr Paul Allison. Has articles on Grommets Surgery and Glue Ear to name a few Send mail to cleftpal@powerup.com.au with questions or comments about this web site. Last modified: January 22, 2002

30. Listings Of The World Health Support Groups Conditions And Listings World Health Support Groups Conditions and Diseases FacialDifferences sticklers syndrome. Listings World, http://listingsworld.com/Health/Support_Groups/Conditions_and_Diseases/Facial_Di

31. Links need; we need Fibro Hugs . sticklers syndrome Website Official SticklerInvolved People Website. Definition of and information http://kikisdragon.niftyfingers.com/Links.htm

Here Be Dragons Magnificent site! All about dragons - history, physiology, dragon links, books, artwork, adopt a dragon; if you love dragons, you'll love this site. Dream Moods Online Guide to dream interpretation. Very Extensive! Dream dictionary, common dreams, dream theory, glossary of dream terms, recalling your dreams - it is so fun to come here and learn about my dreams. The Drakkan Web Over 2000 fantasy pictures - beautiful! - and hundreds of poems. Fairies, Enchanted Creatures, Unicorns, DRAGONS, Women, Knights, Castles, and Enchanted Places. Fantasy Realm Some of the greatest fantasy graphics on the web! Beautiful poems, about dragons, fairies, the goddess, etc. Wicca, Pagan, Goddess info. Astrology Zone What could this site possibly be about...? Get your horoscopes here. The World of Anne McCaffrey Anne McCaffrey is the author of the Pern science fiction/fantasy books, full of dragons and great characters and adventures. Also at her site are some beautiful works of dragon art, and merchandise related to her stories. You can sign up to get personal emails from her, also, which I really enjoy. NiftyFingers My sister's website - check it out! Great poetry, art, rants, links, and more. Panacea page updated regularly.

32. Access Disabled If you have a child with a trach, pierrerobin syndrome or sticklers syndrome orjust a question, please e-mail me. My address is gardenlynx@citrus.zzn.com. http://www.thefryes1.homestead.com/omb.html

Web Site Disabled Access to this Web site has been disabled.

33. Our Miracle Boy CONTACT US!!!! If you have a child with a trach or pierrerobin or sticklers syndromeor just a question, please e-mail us. Our address is fryemic@aol.com. http://hometown.aol.com/fryemic/myhomepage/baby.html

htmlAdWH('7002676', '120', '30'); htmlAdWH('7002276', '234', '60'); Main Create Edit Help Our Miracle Boy on/off Our Little Tyler Joseph T.J. was born March 14,1999 and weighed 5 1/2 pounds. He has a syndrome known as pierre-robin syndrome. It has several abnormalities of the jaw and mouth. His case was severe and he had such a small jaw that his airway was blocked therefore he had to have a tracheostomy. He also had to be fed by tube, nose at first then by g-tube later when he could not learn the bottle from such swallowing difficulty. He was also born with a cleft palate which was repaired in January 2000. His outcome was not known after birth. He had to be ventilated and went through 4 operations by 10 months. He did much better than all the doctors expected and came home at 1 1/2 months on 35% O2 for 2 months. He is now a typical 1 year old kid and not behind in any motor skills. The trach is to come out soon and then he can talk and eat with much more ease. amazed with his total ease of transition. more exciting updates Favorites T.J. has always loved cows and still does. He has many favorite toys but papers are always the

34. CleftPALS QLD INC. Links Page sheets. Sticklers Website. sticklers syndrome is related to PiereRobin Sequence and that in turn can be related to cleft palate. http://home.iprimus.com.au/des_mondo/links.htm

Organizations' Web Sites WideSmiles Based in America and is one of the most comprehensive cleft lip and palate sites that has been found on the net. CleftPALS National (AUS) Headquarters The National Body of CleftPALS for all other states of Australia. Has contacts for all states and some useful information sheets. Sticklers Website Sticklers syndrome is related to Piere Robin Sequence and that in turn can be related to cleft palate. www.cleftsupport.g3web.com The website for the Cleft Lip and Palate Support Group of New Zealand. Has personal stories and some interesting links Personal Web Sites Born to be Cleft :) WebSite run by Kim, 26, who was born with a unilateral cleft lip (which means just being cleft under one nostril), and bilateral cleft palate (no palate at all). Greg and Catherine's Cleft Palate site Professionals Web Sites Dr Paul Allison ENT site Site run by ENT Surgeon Dr Paul Allison. Has articles on Grommets Surgery and Glue Ear to name a few Send mail to cleftpal@powerup.com.au

35. The Royal College Of Ophthalmologists Of London - National Research Strategy - A Wong Contributors Martin Snead, Tom Williamson, Mark Benson, Steve Charles Circulationsticklers syndrome Support Group, Marfan Association, Diabetes UK. http://www.rcophth.ac.uk/research_strategy/research02_authors.html

Back Introduction Epidemiology of Eye Disease in the Older Population Retinal Disorders ... Authors, Contributors and Circulation Authors, Contributors, Circulation Epidemiology of Eye Disease in the Older Population Authors : Angela Reidy, Darwin Minassian Retinal Disorders Authors : Andrew Webster, Usha Chakravarthy, Phil Hykin Contributors : Kevin Gregory-Evans, Phil Murray, Andrew Dick, Simon Harding, Miles Stanford, Ian Rennie Circulation : Alan Bird, Sue Lightman Vitreoretinal Disease Authors : David Charteris, David Wong Contributors : Martin Snead, Tom Williamson, Mark Benson, Steve Charles Circulation : Sticklers Syndrome Support Group, Marfan Association, Diabetes UK Lens and Cataract Author : Steve Tuft Contributors : David Spalton, Helen Seward, Bruce Allan, Chris Liu, George Duncan Glaucoma Authors : Ted Garway-Heath, Simon Morgan, Peng Khaw Contributors : David Broadway, Simon Rankin, Steve Vernon, Augusto Azuaro-Blanco, John Salmon, Clive Migdal Authors : John Dart, Harminder Dua, Frank Larkin

36. ANN/Groong LA Memory Guides Blind Sculptor's Hand When Nare was 7, she was diagnosed with sticklers syndrome, a conditionthat causes retinal detachment. By 12, she was completely blind. http://groong.usc.edu/news/msg65420.html

37. The Iris Fund For Prevention Of Blindness , Paediatric ophthalmic disorders, including Dominant optic atrophy, Retinitis Pigmentosa,sticklers syndrome and Nystagmus, largely in collaboration with the http://www.irisfund.org.uk/legacy.htm

A Legacy to The Iris Fund Your  support  for  the work of The Iris Fund, however you give it, is always welcome, andgreatly  valued.  However, if  after  you haveensured that your family has been adequatelycatered  for in your  Will you are also able toleave  a  Legacy to  The Iris Fund, more vital research can be undertaken, so helping future generations,  as well as those still living, with a better chance of good eyesight. What kind of Legacy? You may choose to leave a specific amount to The  Iris  Fund, or  a valuable  item, or a piece Of property.  However,  the  simplest  kind  of Legacy,  and  that  which  is  most  valuable to  The Iris Fund, is a residual bequest. This is anInstruction  in  your  Will  that  The  Iris Fund  should   receive   the   residue  of  your  estate  (that   which  is   left   over  after  all the other Legacies and costs have been paid)  or a share of  the residue. Your Gift of Sight to the Next Generation It is very simple to include a  legacy, either in in a new Will, by changing your existing Willor  by adding  a  codicil  to it.   Just  ask  your solicitor  or  other  professional  advisor,  who will  help  you  with the  correct wording. Thewords we recommend are:

38. About The Pierre Robin Condition Pierre Robin Sequence usually occurs in isolation, but it can also feature in othersyndromes/condition that have genetic links, such as sticklers syndrome. http://www.pierrerobinuk.org/about.html

Quick Site Navigator Menu Welcome Contents About Pierre Robin General Information for Parents Personal Histories Feeding Advice CLAPA Feeding Catalogue Further Reading Section Benefits About The Pierre Robin Support Group Registration Contact Us Donate/Volunteer Community Gateway Other Important Support Groups Library of PDF Files Credits Page Navigation Difficulties Babies Often Have Professor Michael Patton This page last modified on Pierre Robin Sequence is named after a French physician who identified the main features of the condition. The only features of Pierre Robin are: Micrognathia - a small lower jaw Glossoptosis - a tendency for the base of the tongue to ball up and fall backwards into the throat causing obstruction and therefore breathing difficulties. Cleft Palate - a cleft palate, or a high arched palate without a cleft may be present. The jaw bone continues to grow during childhood and usually fully corrects by adult life. The condition is rare. Estimates range from 1 in 8,000 to 30,000. It is generally thought that this is a sequence of events arising from the jaw being compressed which then leads to the tongue being projected upwards and this is in turn interferes with the closure of the palate. However, it is not fully know why the condition occurs. Maternal virus in the early stage of pregnancy and folic acid deficiency are other areas that have been researched, but nothing conclusive has been determined. Pierre Robin Sequence usually occurs in isolation, but it can also feature in other syndromes/condition that have genetic links, such as Sticklers Syndrome. Careful investigation is therefore required by experienced doctors to ensure that a correct diagnosis and appropriate care is given to babies born with Pierre Robin Sequence.

39. Advice And Information such as, Cataracts, Diabetic Retinopathy, Glaucoma, Macular Degeneration and Nystagmus,as well as lesser known conditions such as sticklers syndrome and Optic http://www.sightconcernbedfordshire.org.uk/advice_and_information.htm

Home ) (Advice and Information) ( Background Computing Fundraising How to Contact Us ... Further Information Attendance Allowance and Disability Living Allowance Sight Concern Bedfordshire appreciates that the prospect of filling in a twenty-page form when you have failing sight can be daunting if not impossible. We are happy to visit you in your home or arrange an appointment for you to come into one of our resource centres, in order to assist you with completing your application and having the highest chance of a successful claim. If you have any queries about your eligibility for either of these benefits, please feel free to contact either of our offices, where our team can advise you of the next step. Starting at £37.00 per week, the extra money will undoubtedly be worth the call. Top Colour contrast Only 4% of people who are registered blind, see absolutely nothing. The remaining 96% do have varying degrees of useful vision and this is where effective colour contrasting can be extremely helpful. Colour contrasting can be taken into consideration when redecorating, writing a letter to a partially sighted or blind person and when equipping a kitchen. For example, if you are thinking of redecorating, try not to go for dark wall colours, as this will restrict the natural light in the room. However it is also best to avoid stark white as this can cause glare. Try to opt instead for a soft, light colour, such as magnolia, cream or pastel, light shades of other colours. Once you have picked your basic wall colour, to liven the overall look up, why not select a mid-wall border, in a darker colour or pattern which will act as a sort of guide around the room for a visually impaired person?

40. Nursing Links Dave Hawley has put many hours into compiling a resource for sticklers syndrome.michey@terrigal.net.au. Copyright © 1999,Last Updated 21/01/99 140655. http://www.terrigal.net.au/~michey/nurslink/nursinglinks.html

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