61. Page 2 JacksonWeiss, Langer-Geidon, parry-rombergs, Pfeiffer, Pierre-Robin, Russell-Silver, Pierre-Robin syndrome/Sequence Garland Neal s PRS Story http://members.tripod.com/~Craniofacial/page2.htm

setAdGroup('67.18.104.18'); var cm_role = "live" var cm_host = "tripod.lycos.com" var cm_taxid = "/memberembedded" Search: Lycos Tripod Murderball Share This Page Report Abuse Edit your Site ... Next J - Z The Craniofacial Disorders indexed on this page are: Jackson-Weiss, Langer-Geidon, Parry-Rombergs, Pfeiffer, Pierre-Robin, Russell-Silver, Saethre-Chotzen, Sagittal Synostosis, Shprintzen-Goldberg, Stickler, and Treacher-Collins. Page 1 includes Antley-Bixler, Apert, Arhinia, Baller-Gerold, Carpenter, Craniosynostosis, Crouzon and Goodman. Jackson-Weiss National Organization of Rare Disorders OMIM Langer Giedion Langer-Giedion Syndrome Association National Organization of Rare Disorders Parry-Rombergs (Rombergs) National Organization of Rare Disorders Online Mendelian IM entry NINDS Rombergs Connection Pfeiffer Syndrome MacKenzie's Page Haley's Page National Organization of Rare Disorders OMIM ... Ped Database Pierre-Robin Syndrome/Sequence Garland Neal's PRS Story Pierre Robin Network National Organization of Rare Disorders Ped Database Russell-Silver The Magic Foundation NORD OMIM Saethre-Chotzen (Chotzen) NORD OMIM Ped Database Sagittal Synostosis Sagittal Synostosis Cranio Support Group Sagittal Synostosis Homepage Shprintzen-Goldberg NORD Search their database, articles are available.

62. Parry Rombergs Syndrome Facial Differences Conditions And Diseases Support Group Domain Names and more with your own business. A comprehensive resource on SupportGroups Conditions And Diseases Facial Differences Parry Rombergs syndrome. http://support-groups.health.designerz.com/support-groups-conditions-and-disease

var tag="healdshb";var domain="Support-Groups.Health.Designerz.com"; Support Groups News Support Groups Chat Support Groups Site Map Support Groups Advertising ... Support Groups Chat Channels Visited Clear Featured Links Health Health Shopping Health Books Health Issues ... Support Groups Support Groups Conditions And Diseases Facial Differences Parry Rombergs Syndrome Suggest a site Support Groups Conditions And Diseases Facial Differences Parry Rombergs Syndrome Featured Results (opens in a new window) The Romberg's Connection International support group for families whose lives are affected by Romberg's syndrome. ratings : The Romberg's Connection Romberg's Syndrome General information, contacts, on-line discussion groups and links. ratings : Romberg's Syndrome Parry Romberg Syndrome Information Page Information compiled by the National Institute of Neurological Disorders and Stroke (NINDS). Definition, treatment, prognosis, research and details of relevant organizations. ratings : Parry Romberg Syndrome Information Page Parry Romberg Syndrome Stories from people affected by Parry Romberg syndrome, support and information.

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64. Health/Support Groups/Conditions And Diseases/Facial Differences/Parry-Rombergs Stories from people affected by Parry Romberg syndrome, support and information.url www.cannylink.com/diseaseparryromberg.htm; Parry Romberg syndrome http://www.thedoctorslounge.net/dir/Health/Support_Groups/Conditions_and_Disease

Advertisement Powered by Careerbuilder Search for: Home Humor Advertising Contact ... Links Specialties Cardiology Chest diseases Dermatology Endocrinology ... Urology Other Sections Membership Research Tools Medical Tutorials Medical Software ... Specialized Centers Headlines: The Medical Website Directory Popular Categories Popular Links Web Sites Parry Romberg Syndrome Stories from people affected by Parry Romberg syndrome, support and information. url: www.cannylink.com/diseaseparryromberg.htm Parry Romberg Syndrome Information Page Information compiled by the National Institute of Neurological Disorders and Stroke (NINDS). Definition, treatment, prognosis, research and details of relevant organizations. url: www.ninds.nih.gov/health_and_medical/disorders/par... The Romberg's Connection International support group for families whose lives are affected by Romberg's syndrome. url: www.geocities.com/HotSprings/1018/ Romberg's Syndrome General information, contacts, on-line discussion groups and links. url: www.familyvillage.wisc.edu/lib_rombs.html

65. World Craniofacial Foundation Our group was formed in June of 97 by Theresa Hildebrand and Terry Burau forpeople with Parry Rombergs syndrome. Rombergs is a very rare disorder causing http://www.worldcf.org/support_groups.cfm

About Us Treatable Conditions International ... Ways to Help The World Craniofacial Foundation is dedicated to helping children and familes who experience deformities of the head and/or face by providing support and access to life-changing procedures. Reconstruct a face; create a new life. Today, we have the knowledge and technology to make these children look and feel normal. It is now possible to acheive excellent outcomes in the treatment of even the most complex craniofacial deformities. For the task ahead, support and participation is needed from all of us in order to transform the lives of those who need help. World Craniofacial Foundation 7777 Forest Lane Ste C-621 P.O. Box 515838 Dallas, TX 75251-5838 fax 972-566-3850 www.worldcf.org Need Assistance? Support Groups Media Resources ... Links Support Groups CRANIOFACIAL TREATMENT CENTERS University of California - Los Angeles Director: H.K. Kawamoto, Jr. MD, DDS UCLA School of Medicine Division of Plastic Surgery 10833 Le Conte Ave.

66. Welcome To Friends' Health Connection - Friends' Make All The Difference Parry Rombergs syndrome PelizaeusMerzbacher Pelvic Inflammatory Disease (PID)Pericarditis Perimenopause Peripheral Neuropathy http://www.friendshealthconnection.org/illnesses.php

Items: Total: $ 0.00 About Us Find a Friend (Join) Affiliate Hospitals Promotional Items ... Home List of Illnesses Below is a list of the health problems for which we currently have members. New members join daily. Please feel free to fill out a membership application even if your health problem is not listed. As new members join with your health problem we will connect you. A B C D ... W X Y Z A Abdominal Adhesions Abdominal Pain Abherrant Regeneration Accident survivors Achalasia Acid Reflux Acne Rosacea Acoustic Neuroma Acute Disseminated Encephalomyelitis Adenocarcinoma Addisons Disease Agoraphobia Adrenal Dysfunction Agnogenic Myeloid Metaplasia AIDS Alcoholism (recovering) Allergic Broncho Pulmonary Aspergillosis Allergies (General) Allergies (Bee) Allergies (Food) Allergies (to chemicals) Allergies (to mold) Alloimmunthrombocytopenia Alopecia Areata Alzheimer's Amputations Amyotrophic Lateral Sclerosis (ALS) Anaphylaxis Anemia Anemia (Hemolytic) Anemia (Pernicious) Angina Angiodema Angogenic Metaplasia Ankylosing Spondylitis (see also Arthritis) Anorectal Problems Anorexia Antiphospholipid Antibody Syndrome Anxiety Aorta Pulmonary Window Aortic Valve Replacement Aphasia Apnea (Sleep) Archnoiditis Arnold-Chiari Malformation Arteriovenous Malformation (AVM) Arteritis (Giant Cell Temple) Artheroclerosis Arthralgia Arthritis Arthritis (Adult Onset) Arthritis (Degenerative) Arthritis (Juvenile Rheumatoid) Arthritis (Non-Rheumatoid Inflammatory) Arthritis (Osteo) Arthritis (Zero-negative)

67. Theresa S Story 3 years old My name is Theresa Hildebrand, and I have Parry Rombergs syndrome.I have posted some pictures of me growing up, in the hopes that it will help http://www.geocities.com/HotSprings/1018/personal_stories/Theresa/theresa.html

Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case. As a support group, The Romberg's Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience. Back to Main Page Back to Personal Stories All photos and text are the property of the families represented, and may not be used without their consent. This was taken on the day of my First Communion, when I was 8 years old. As you can see the atrophy was well defined at this point. This is my 6th grade school picture from when I was 11 years old. You can see better how my right eye seems to be back further than my left eye. Also the atrophy on my chin is getting darker. The indentation of my forehead is also more pronounced at this point. I picked out these glasses myself. My older sister Susan got mad because I got the same ones that she had. Aahh ! - The Seventies ! This isn't a very good picture, but you can see how the indentation on my forehead travels upward. I was around 13 years old when this picture was taken. As I find more pictures, I will get them scanned and posted on my page. Most of the pictures that I have, I am turning my "good side" to the camera. Really makes me wish I didn't destroy so many pictures of myself over the years.

68. Sherree's Story My name is Sherree and I have Parry Romberg syndrome, most of you have never Parry Rombergs is also called hemi facial atrophy . Parry Rombergs is a http://www.geocities.com/HotSprings/1018/personal_stories/Sherree/sherree.html

Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Rombergs Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case. As a support group, The Rombergs Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience. Back to Main Page Back to Personal Stories All photos and text are the property of the families represented, and may not be used without their consent. My Story June 23, 2005 My name is Sherree and I have Parry Romberg Syndrome, most of you have never heard of the name. Parry Romberg Syndrome is a very rare syndrome. Only 500 people in the world have been diagnosed with it. Parry Rombergs is also called "hemi facial atrophy". Parry Rombergs is a pathological process involving progressive wasting of the skin, subcutaneous fat, muscle and occasionally bones of the face. It was first discovered by Parry in 1825 and by Romberg in 1846. Eulenburg described the entity as “progressive facial hemi atrophy” in 1871. The onset is slow and progressive and begins usually during the first two decades of life, more often between the ages of 5 and 15. The progression of atrophy usually lasts from 2 to 10 years, following which the process seems to enter a stable or “burn out” phrase. There is no cure and no treatment for this disease. Only a multitude of surgeries for different parts of the affected areas.

69. Aways.com: Conditions And Diseases, Facial Differences, Support Groups, Parry-ro Parry Romberg syndrome Stories from people affected by Parry Rombergsyndrome, support and information. Parry Romberg syndrome http://aways.com/Directory/Health/Support_Groups/Conditions_and_Diseases/Facial_

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71. Burn Support Groups Database To contact my friend Theresa s group, email or link. Auntie_5@hotmail.com;Rombergs@hotmail.com; Link to the Parry Rombergs syndrome web site in the USA http://www.burnsupportgroupsdatabase.com/files/south-af.htm

South Africa Correponder? Est ce qui'l y a quelqu 'un qui veut corresponder en Français par e-mail avec Evelyne en Africe-du-Sud? (Evelyne a 24 ans et elle etait brûler en Gabon) E-mail: firechildren@icon.co.za Parry-Romberg's Syndrome International Support Group The Parry-Romberg's Syndrome is a degenerative disease thats eats away the tissues, muscles and bones of the face. The newly founded group's goal is to find people with Romberg's disease all over the world to offer support and friendship. Although the group is still relatively small and very new, they have faith that people will contact them through this database. Anyone out there who would like to join? Very little is still known about Romberg's ....so right now, all they have is each other. To contact my friend Theresa's group, e-mail or link: Auntie_5@hotmail.com Rombergs@hotmail.com Link to the Parry Rombergs Syndrome web site in the USA To the top of this page Return to Home page Return to database

72. Burns/Disfigurement Etc. Support Group Database all they have is each other. Contact Theresa s group, email or link.Rombergs@hotmail.com Link to the Parry Rombergs syndrome web site in the USA http://www.burnsupportgroupsdatabase.com/files/australi.htm

Australia Parents of Burn Survivors Lisa Smith is looking to share support and information with other parents of burns surviors. Anybody out there? You can contact her by e-mail: Lisa Burn Camp: Camp Oz Location: Brisbane, Australia Contact: Sandra King, OT, Director of Burn Camp Royal Children's Hospital 9 Roseby Avenue, Clayfield Queensland 4011 Australia Tel: 011 617-3262-7242 Fax: 011-617-3262-8247 Affiliation: Royal Children's Hospital Information: Season Length (days) # Kids Age Range Spring/October Burn Camp: Camp Oz II Location: Brisbane, Australia Contact: Sandra King, OT, Director of Burn Camp Royal Children's Hospital 9 Roseby Avenue, Clayfield Queensland 4011 Australia Tel: 011 617-3262-7242 Fax: 011-617-3262-8247 Affiliation: Royal Children's Hospital Information: Season Length (days) # Kids Age Range Spring/October 13 and up Burn Camp: Children's Burn Camp Location: Sydney, Australia Contact: Cheri Templeton, Coordinator

73. /Health/ConsumerSupportGroups/FacialDifferences/Parry The Rombergs Connection is an international support group made up of over 130individuals and families whose lives are affected by Rombergs syndrome. http://209.223.178.10/dir/$/Health/ConsumerSupportGroups/FacialDifferences/Parry

74. Electricbrain Home Index Health Consumer Support Groups Facial The www.electricbrain.com server is an experimental accuracy and authority checkerfor all Web content in any subject area. This server employs the Resource http://www.electricbrain.com/index/Health/Consumer_Support_Groups/Facial_Differe

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Home About Us Services Support ... Search the Internet Based in Kingston Ont, PageLite is a web Hosting / Development company. Our "Site Manager" has helped many Kingston and area businesses maintain their own web sites. "Our Site Manager solution is so simple we GUARANTEE you'll be editing pages and uploading photos after just 5 minutes of instruction." With our SITEMANAGER software you don't need to be a computer expert. Ever use MS Word or Word Perfect? then this will be child's play. Never seen a computer? or used one? well don't worry we'll sit down with you and show you how. For less then your average cable bill we can provide you with a complete internet solution: Create as many pages as you wish at no extra charge. 20 E-Mail addresses. 5 Hours of On Site Training. 24 / 7 Technical Support. A Custom Built Template. (Limited time offer) Search Engine Submission. In house, Graphic Artist at your disposal. Basic Packages start for only a month.

77. Website Design Kingston Ontario Canada, Pagelite - A Website Design / Internet S Website Design, Kingston Ontario. Pagelite lets you create your own website onlinewith our content management system geared to business commerce with shopping http://home.pagelite.ca/html/2/main/odp/browse/Health/Conditions_and_Diseases/P/

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