41. Stickler Involved People stickler video CONTACT US, Welcome! Stickler syndrome welcome to the official Stickler Involved People web site. created by www.cermaktech.com. http://www.sticklers.org/sip/

MEDICAL INFO definition and info ways to cope NETWORKING ... CONTACT US welcome to the official Stickler Involved People web site

42. Associated Syndromes And Conditions It is believed that 2530% of those with PRS have sticklers also. VCFS is a common cause of Robin sequence, second only to Stickler syndrome. http://www.pierrerobin.org/associatedconditions.htm

Home New parents About Us Support ... Message Board A place to call home, where you are never alone Associated Syndromes and Conditions As we continue to reach out to families who have a member affected by PRS, we have found there is usually another condition present. Through our reading, we have found several case studies which indicate only 15-17% of those with PRS have isolated PRS. The conditions we list below are shown to make you aware of what else could be present in a child with PRS. This list was compiled using data from the families in our organization and material from medical articles we have read. We have tried to list basic symptoms, links to medical articles and links to support groups for that particular condition. This is still under construction due to the research involved. If you have information based on your own experience you can add to this page, please email webmaster@pierrerobin.org Our members felt it important to list these, so families will be aware of other conditions that can be present. You need to discuss these issues and your child's symptoms with a geneticist. ADAM Sequence Beckwith-Wiedemann http://beckwith-wiedemann.org/

43. Useful Links | Craniofacial Center | Children's Hospital And Regional Medical Ce Stickler syndrome. sticklers A Web site that provides medical information, networking, support, news and updates for families affected by Stickler syndrome. http://craniofacial.seattlechildrens.org/resources/links.asp

@import url(/assets/styles/main.css); Skip Navigation Search: Craniofacial Home About Us Our Services Conditions Treated ... Glossary Shortcuts E-mail This Page Useful Links Related Items Guide to Children’s Helpful Services General craniofacial links About Face International An international organization that provides information and support to individuals with facial differences and their families. About Face USA A domestic nonprofit organization dedicated to providing information, emotional support and educational programs to individuals who have a facial disfigurement and to their families. Resources include online fact sheets and a free newsletter for families. Changing Faces Although Changing Faces' primary focus is on disfigurements affecting the face, much of their work has relevance to disfigurements of other parts of the body. They address disfigurements of any origin, whether present at birth or acquired later in life. Children’s Craniofacial Association A national, nonprofit organization dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional and educational concerns relating to craniofacial conditions. FACES An organization providing information for families affected by craniofacial conditions. The site includes information regarding financial assistance.

44. Coalition For Heritable Disorders Of Connective Tissue www.sticklers.org Contact Person Pat Houchin Coordinator sip@sticklers.org. Williams syndrome Association (WSA) PO Box 297 Clawson, MI 480170297 http://www.chdct.org/members.htm

More than one half million Americans are estimated to be affected by one of the 200 known conditions categorized as heritable disorders of connective tissue. Although each disorder, such as those described in this brochure, has a common denominator - connective tissue disorder - most of them as yet have no known cause or effective treatments. The following conditions are represented by the member agencies of the Coalition for Heritable Disorders of Connective tissue: Chondrodysplasias Ectodermal Dysplasias Ehlers-Danlos Syndrome (EDS Epidermolysis Bullosa (EB) Fibrodysplasia Ossificans Progressiva (FOP) Mitral Valve Prolapse (MVP) Osteogenesis Imperfecta (OI) , Denver, CO, and PXE International, Inc CHDCT Membership (Revised 8/04) Children's Brittle Bone Foundation 7701 95th Street Pleasant Prairie, WI 53158 Tel: 866-694-2223 Fax. 262-947-0724 E-mail: info@cbbf.org Web site: http://www.cbbf.org

45. KSG Scholarship Center For People With Short Stature, Dwarfism, And Related Disa Must be diagnosed with Stickler s syndrome http//www.sticklers.org/sip/scholarship. html. Application is due June 15th, 2004. (last checked May 2004). http://www.ksginfo.org/schol.html

KSG Scholarship Center Help paying for school for people of short stature Kniest, SED, SMD, and associated conditions Lists of scholarships for people with disabilities Specific types of scholarships: People with dwarfism People with disabilities (general disabilities) Deaf/hard of hearing Blind/visually impaired People with epilepsy People with learning differences ... Specific racial and ethnic groups General scholarships High School teachers Re-entry/non-traditional students , students returning later in life. Scholarships for Gays, Lesbians, and Transgendered individuals Tips for getting through college : computer resources, computers where you do not have to typye Help paying for medical expenses Scholarship Search vs. Scholarship Scam How to tell the difference! Did we miss any scholarships? Please send us scholarships to add. Note: Scholarships for multiple categories will be listed in all categories. For example, minority women in science will be listed under both minority and women. Please contact us if you have any questions or comments. Click here for navigation links to other sections of this website.

46. Support Information Stickler Involved People, www.sticklers.org. Information and support for individuals affected by Stickler syndrome. SturgeWeber Foundation, 800-627-5482 http://dentistry.ucsf.edu/cranio/support.htm

About Face A support and information network concerned with facial differences. American Cleft Palate-Craniofacial Association 800-24-CLEFT www.cleftline.org 24 hour parent information and support line A parent run support network for families affected by Apert syndrome California Children's Services 415-554-9952 (SF) Medical insurance for middle and low-income children with craniofacial anomalies and other chronic conditions. (Available in all California counties.) Changing Faces www.changingfaces.co.uk "Concerned with the social and emotional consequences of facial disfigurement." www.childrenswishes.org Pen-pal program for children with disabilities. Children's Craniofacial Association www.ccakids.com

47. What We Know About Sticklers Stickler syndrome shares many characteristics with the Marshall, Wagner, The radiographic characteristics of the Stickler syndrome during infancy http://hometown.aol.com/coach001/page2.html

htmlAdWH('93212823', '728', '90'); Main Other Support WHAT WE DO KNOW ABOUT STICKLER SYNDROME Stickler Syndrome Synonyms arthro-ophthalmopathia hereditaria arthro-ophthalmopathy (AO, AOM) hereditary arthro-ophthalmopathy hereditary progressive arthro-ophthalmopathy Summary Progressive myopia beginning in late childhood, vitreoretinal degeneration, retinal detachment causing blindness, cataracts, hearing loss, cleft palate, and spondyloepiphyseal dysplasia. The craniofacial features range from essentially normal face to dish facies with micrognathia, depressed bridge of the nose, long philtrum, and prominent eyes. Patients with Stickler syndrome often have the feature of Robin syndrome (brachygnathia, cleft palate, glossoptosis, and backward and upward displacement of the larynx). Some cases have mental retardation. The clinical manifestations are variable and may differ from one patient to another. Stickler syndrome shares many characteristics with the Marshall, Wagner, and Walden syndromes and is sometimes designated as the Marshall-Stickler, Wagner-Stickler, or Walden syndrome. The radiographic characteristics of the

48. Colosip2000 About Stickler syndrome? What We Do Know About Stickler syndrome National Institute of Health (search sticklers or tissue dissorders) http://hometown.aol.com/coach001/page1.html

htmlAdWH('93212823', '728', '90'); Main Other Support Welcome to Colorado SIP 2002 A local Colorado support group for those inflicted with Stickler Syndrome National Stickler Involved People Canada Chapter of SIP Contact Rick (National Assistant Coord.) Colorado SIP Coordinators Rick(L) and Randy(R) heading to the National SIP Conference. Contact Randy (Web Page creator) Looking for information About Stickler Syndrome? What We Do Know About Stickler Syndrome National Institute of Health (search Sticklers or tissue dissorders) National Institute of Dental and Craniofacial Research (search for Stickler Syndrome) Dave Hawley's Home Page (lots of links) Global Doctors Guide (good link to help locate Drs.) Colorado Sip Announces that it will host 2005 National Conference (read all about it) 2002 National Conference Report (coming soon) Just for Kids Siemens Hearing Aids (my favorite Hearing Aid, very leading edge company) last updated 10/10/02 page created with Easy Designer

49. CCDD: Family: Education: Descriptions Of Disorders: Introductory Article Email sip@sticklers.org www.sticklers.org. Stickler syndrome Support Group PO Box 371 Waltonon-Thames Surrey KT12 2YS Phone 44-01932 267635 http://www.hopkinsmedicine.org/craniofacial/Education/DefinedArticle.cfm?Article

50. Cleft Advocate - Syndromes Parent and patient support. Stickler syndrome. sticklers.org. Definition, information and resource links. Stickler Involved People http://www.cleftadvocate.org/syndromes.html

@import url(http://www.homestead.com/~media/elements/Text/font_styles.css); Amniotic Band Syndrome Amniotic Band Syndrome Information and personal stories ABS Support Network A Yahoo group The ClubFoot Club About ABS and its many manifestations, including cleft lip and palate Apert Syndrome A Guide to Understanding Apert Syndrome From the Children's Craniofacial Association Aperts Overview Discusses similarities between Aperts and Crouzons Teeter's Page www.apert.org The Apert Listserv Correspond with other Aperts families Arhinia Simply Kristi An incredible website! Beckwith-Wiedemann Beckwith-Wiedemann Syndrome From the Pediatric Database (refers to midface hypoplasia) The Beckwith-Wiedemann Support Group Information and support includes on-line support group Beckwith-Wiedemann Group UK Birthmarks/Hemangiomas/Vascular Malformations Birthmarks.com Frequently asked questions, treatment resources and more National Organization of Vascular Anomalies Aiding families in the diagnosis and treatment of hemangiomas/vascular malformations My Port Wine Stain Personal stories and links to information on treatment, make-up and more!

51. NAGER & MILLER SYNDROMES STICKLER syndrome. Stickler Involved People (SIP). 15 Angelina Dr. Augusta, KS 67010. (316) 7752993. sip@sticklers.org. http//www.stickler.org http://www.as.wvu.edu/~scidis/organizationN_S.html

Foundation for Nager and Miller Syndromes (FNMS) 1827 Grove St. #2 Glenview, IL 60025-2913 (847) 724-6449 (fax) fnms@interaccess.com http://www.fnms.net -Acrofacial Dysostosis, Nager Type NEUROFIBROMATOSIS National Neurofibromatosis Foundation John Radziejewski Director of Public Education 95 Pine St., 16th Floor New York, NY 10005 (212) 747-0004 (fax) nnff@nf.org http://www.nf.org Neurofibromatosis, Inc. 9320 Annapolis Rd., Ste. 300 Lanham, MD 20706-2924 (301) 918-0009 (fax) nfinc1@aol.com http://www.nfinc.org -Von Recklinghausen Disease NEUROLOGICAL DISORDERS Association for Comprehensive Neurotherapy Latitudes PO Box 210848 Royal Palm Beach, FL 33421 (561) 798-9820 (fax) acn@latitudes.org Children's Neurobiological Solutions 1726 Franceschi Rd. Santa Barbara, CA 93103 (866) 267-5580 or info@cnsfoundation.org http://www.cnsfoundation.org The Colleen Giblin Foundation Meg Minassian, Exec, Dir. 690 Kinderkamack Rd., Ste. 104 Oradell, NJ 07649 (201) 262-6442 (fax) cgf01@aol.com http://www.colleengiblinfound.org NEUROTRANSMITTER DISEASES, PEDIATRIC Pediatric Neutransmitter Disease Association 6 Nathan Dr.

52. 04.26.2004 www.sticklers.org Colorado Stickler syndrome Page Dave Hawley s Stickler syndromebest Stickler Involved People-HomePage Stickler syndrome-involved http://genetics.rusmedserv.com/catalog/syndlist/

Genetic Catalog SYNDROMES (alfabetical list) Genetic Catalog GENERAL ASPECTS HISTORY EUGENICS ... PRIVATE SYNDROMOLOGY SYNDROMES (alfabetical list) SCREENING OF THE INHERITED METABOLIC DISEASES GENETIC COUNSELLING PRENATAL DIAGNOSIS PREIMPLANTATION DIAGNOSIS ... Case Genetic Reports Search Genetics: åíåòèêà ÷åëîâåêà online Genetic Center E-mail: SYNDROMES (alfabetical list) A B C D ... Z A Aarskog syndrome Aarskog-Scott syndrome-OMIM 305400 Aarskog syndrome-Online and Offline Support A Aarskog syndrome-support groups-Kansas Univ. AARSKOGS syndrome-PedBase ... Aarskog syndrome-Support Groups Aase syndrome Aase syndrome - Pediatric Encyclopedia Acanthosis Nigricans Acanthosis Nigricans Maligna-DermIS Online Atlas Acanthosis Nigricans Benigna-DermIS Online Atlas Achondrogenesis Achondrogenesis - NORD Achondroplasia Achondroplasia Achondroplasia-Baby Net Achondroplasia (rev1998) Achondroplasia-Photo-Medical Genetics ... Health Supervision for Children With Achondroplasia (RE9514) Acrodermatitis Enteropathica Acrodermatitis enteropathica-DermIS Online Atlas Acrodysostosis Acrodysostosis - Pediatric Encyclopedia Acrodysostosis - NORD Acromegaly Acromegaly-DermIS Online Atlas Acromesomelic Dysplasia Acromesomelic Dysplasia - NORD (abstract) Acromicric Dysplasia Acromicric Dysplasia - NORD ADAM COMPLEX

53. Radspace : ¿µ»óÀÇÇб³À° Library Stickler syndrome, sticklers.org. Stickler syndrome / About stickler syndrome. Sun Exposure, American Academy of Ophthalmology http://bbs.radiology.or.kr/radspace/diseases/index.asp?ID=D020&Page=2

54. Stickler S WebRing This is a ring of Stickler Involved People (SIP) and their personal web sites. Find out more about Stickler syndrome at http//www.sticklers.org/ http://u.webring.com/hub?ring=sticklers

55. Foundation For Faces Of Children: Web Sites http// www.pierrerobin.org. STICKLER syndrome. Stickler Involved People http// www.sticklers.org. TREACHERCOLLINS syndrome. Treacher Collins Foundation http://www.facesofchildren.org/library/web.html

Library Home Library Web Sites GENERAL RESOURCES Let's Face It http://www.faceit.org Cleft Palate Foundation http://www.cleftline.org American Cleft Palate-Craniofacial Association http://www.acpa-cpf.org A Guide for Educators: Core Curriculum for Cleft Lip/Palate and Other Craniofacial Anomalies, 2002 http://www.acpa-cpf.org/EducMeetings/Core%20Curriculum%202002.pdf About Face http://www.AboutFaceInternational.org or http://www.AboutFaceUSA.org Faces: The National Craniofacial Association http://www.faces-cranio.org/ SPECIAL CONDITIONS APERT SYNDROME Apert Syndrome http://www.apert.org CLEFT LIP/PALATE Cleft Advocate http://www.cleftadvocate.org Prescription Parents http://www.prescriptionparents.org Wide Smiles http://www.widesmiles.org Center for Children with Special Needs, Seattle WA. Critical Elements of Care: Cleft Lip and Palate, 2000 http://www.cshcn.org/forms/Cleft_Lip_and_Palate_3-00.pdf CROUZON SYNDROME Crouzon Support Network http://www.crouzon.org

56. Health & Wellness, Support, Illnesses, Eye Conditions, Sticklers, This is a ring of Stickler Involved People (SIP) and their personal web sites. Find out more about Stickler syndrome at http//www.sticklers.org/ http://dir.webring.com/rw?d=Health___Wellness/Support/Illnesses/Eye_Conditions/S

57. Dave Hawley's Stickler Syndrome Page Stickler s syndrome defines a set of closelyrelated genetic connective tissue In the preface to this book by Wendy Hughes, who has Stickler s syndrome, http://members.aol.com/dhawley/stickler.html

Dave Hawley's Stickler Syndrome Page This is a page devoted to indexing on-line information related to Stickler's Syndrome. It has not been thoroughly edited for two years, so it and the links in it are somewhat out-of-date. For the latest information, please see the SIP (US) website at http://www.sticklers.org/ or the Stickler Syndrome Support Group (UK) website at http://www.netcomuk.co.uk/~gfmsssg/ Stickler's Syndrome defines a set of closely-related genetic connective tissue disorders caused by a range of collagen gene mutations. It is an autosomal dominant trait, meaning that it is independent of sex and is expressed in a person with a single copy of the diseased gene. It thus has a 50% chance of being passed from parent to each child. Its expression can vary greatly within and among families, and is often recognized after a child is born with some degree of cleft palate or develops cataracts and/or retinal detachments at an early age. Its other expressions can include extreme myopia, hyperextensibile joints and arthritis, a somewhat flat face and small jaw and high frequency hearing loss. There are a wide range of collagen disorders with overlapping symptoms, so a genetic evaluation is required in order to diagnose Stickler's syndrome. Early and regular eye exams by an informed ophthamologist can make effective treatment of myopia, cataracts, and detached retinas possible. Craniofacial, skeletal, auditory, and cardiac evaluations may be considered. Contact sports should probably be avoided.

58. Stickler Syndrome / Family Village Library Stickler syndrome Stickler syndrome stories and support Stickler syndrome Support Group United Kingdom Stickler syndrome Outreach - Oregon http://www.familyvillage.wisc.edu/lib_stic.htm

Stickler Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Stickler Syndrome" Who to Contact Stickler Involved People (SIP) 15 Angelina Augusta, Kansas, USA 67010 316-775-2993 (fax) E-mail: sip@sticklers.org Website: http://www.stickler.org The mission of Stickler Involved People is to educate and give support to people affected by Stickler Syndrome. They have a shared network and are in the process of starting a pen pal group for all ages. Stickler Involved People publishes a quarterly newsletter, Stickler Involved People Newsletter , at no cost to members, and a brochure, "Strickler SyndromeWhat You Need to Know First." They have a bibliography of articles regarding the syndrome that is available. You can contact them for a list of articles and to obtain a particular article. Additionally, SIP collects information on physicians and researchers who treat/study the condition and makes this information available upon specific request. They will provide referrals dependent upon need. Where to Go to Chat with Others Stickler Syndrome Stickler Syndrome stories and support SIP Discussion List The SIP mailing list is maintained by Stickler Involved People. It's intended to provide a way for people to communicate and distribute information and experiences about Stickler Syndrome and those it affects.

59. Stickler Syndrome Stickler syndrome may be the most common tissue disorder in the United States, People with Stickler syndrome have the following characteristics http://www.faces-cranio.org/Disord/Stickler.htm

The National Craniofacial Association P. O. Box 11082 * Chattanooga, TN 37401 Stickler Syndrome What is Stickler Syndrome? Stickler Syndrome may be the most common tissue disorder in the United States, possibly affecting 1 in 10,000 persons. People with Stickler Syndrome have the following characteristics: some degree of cleft palate cataracts and/or retinal detachment at an early age a flat face a small jaw skeletal abnormalities Why did this happen? Doctors are uncertain what causes Stickler Syndrome. They believe it is the result of a mutation of the genes during fetal development. Will this happen to children I have in the future? Stickler Syndrome tends to run in families. There is a 50% chance of passing it on to future children if you carry the trait. What kinds of problems could my child have? In addition to the physical characteristics common to Stickler Syndrome, your child may have the following problems: joint pain scoliosis hearing loss mitrovalve prolapse Will my child need surgery? Depending on the severity of the Stickler Syndrome, your child may need some or all of the following surgeries:

60. Stickler Syndrome Stickler syndrome international support groups, clinics with genetic counselors and geneticists. http://www.kumc.edu/gec/support/stickler.html

Stickler syndrome Stickler Involved People (SIP) 15 Angelina Augusta, KS 67010 USA Phone: (316) 775-2993 E-mail: sip@sticklers.org Web site: www.sticklers.org/sip/ Colorado Chapter Stickler Syndrome Support Group , United Kingdom Phone: (0011 44) 01932 229421 E-mail: wlhsssg@netcomuk.co.uk Other web resources Also See: National organizations information on genetic conditions or birth defects Information for Siblings and Family Members Stickler Syndrome Stickler Syndrome (Hereditary Arthroophthalmopathy) GeneReviews, GeneClinics Stickler Syndrome Page compiled by individual (Dave Hawley) DHawley@aol.com (home) or dave@lan.nsc.com (work) includes references and glossary Stickler Syndrome Type I and Type II Online Mendelian Inheritance in Man (OMIM) Boys and Girls Town National Research Hospital Center for Craniofacial Development and Disorders , Johns Hopkins University, Baltimore, MD Department of Cell Biology , Dr. Olsen, connective tissue research, Biological and Biomedical Sciences Harvard Medical School American Association for Pediatric Ophthalmology and Strabismus Marshall Syndrome , Online Mendelian Inheritance in Man (OMIM) Search AltaVista for "Stickler Syndrome"

A  B  C  D  E  F  G  H  I  J  K  L  M  N  O  P  Q  R  S  T  U  V  W  X  Y  Z

Page 3     41-60 of 99    Back | 1  | 2  | 3  | 4  | 5  | Next 20