1. Osteogenesis Imperfecta Foundation: Welcome To The OI Foundation Homepage! õ (Click on our logo at any time to return to this homepage.) (Updated 5/19/04). Welcome to the osteogenesis imperfecta Web Site! http://www.oif.org/

Click on our logo at any time to return to this homepage.) (Updated 5/19/04) Welcome to the Osteogenesis Imperfecta Web Site! Osteogenesis Imperfecta (OI) commonly known as the "brittle bone" disorder is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. A person with OI can break a rib while coughing, or a leg by rolling over in their sleep. What's New in the Community: Make Your Hotel Reservations Now! If you're planning to attend the 2004 Conference, and haven't already made your hotel reservations or sent in your conference registration form, please do so soon. The reserved room block at the Adam's Mark is already filled, but the hotel will honor the $109 room rate as long as rooms are available. Your prompt registration helps us accurately plan meal and social functions to keep our costs as low as possible. Be sure to visit the Conference Pages to look for new information about the conference. We've recently added travel discount and scooter rental information to the pages. Conference Scholarship News The scholarship committee, convened by the board of directors, is currently reviewing all 2004 Scholarship applications. Scholarships will be awarded and recipients notified before May 30, 2004. Thank you to the Emmett R. Quady Foundation for making these scholarships possible!

2. Osteogenesis Imperfecta: Can Diet Help? Explores the possible role of diet and nutrition in osteogenesis imperfecta. Many researchers believe that osteogenesis imperfecta is an incurable genetic disorder caused nutrition as a factor in osteogenesis imperfecta, then there are logical explanations http://www.ctds.info/oi.html

Con nective Tissue Disorder Home Search Site Map ... Links Osteogenesis Imperfecta The Links to Nutrition Read my Content: Osteogenesis Imperfecta, Logic and Genetics Symptoms of Osteogenesis Imperfecta Compared to Symptoms of Nutritional Deficiencies Osteogenesis Imperfecta, Logic and Genetics Many researchers believe that osteogenesis imperfecta is an incurable genetic disorder caused solely by defective collagen genes. But is it? Many of the features of OI cannot logically be explained by defective collagen genes alone. If you consider nutrition as a factor in osteogenesis imperfecta, then there are logical explanations for many features of the disorder. If osteogenesis imperfecta were really caused solely by a defective collagen gene, then why would a collagen abnormality cause short stature, enlarged foreheads, hyaluronic acid abnormalities, flat nasal bridges, hypercalciuria (excess calcium in the urine) and heavy menstrual bleeding , all of which are common features of osteogenesis imperfecta? A defective collagen gene simply does not provide a logical explanation for many of the features we know about the disorder.

3. Osteogenesis Imperfecta Network Dedicated to support others dealing with the disease. http://www.geocities.com/Heartland/Hills/5769

Hello, my name is Sabrina and I am the founder of this O.I. Network. I was born in November 82 with type III Osteogenesis Imperfecta (A.K.A O.I.). I have created this web page in the hopes to help others dealing with this. Thank you. You can contact me at: My private email Also in case anyone is interested, this picture of me was taken on February 2nd 2003. This Section: The Life of families with OI-Biographies A brief history of Sabrina's life Disabled's Rights, an article I wrote What Is Beauty? A poem I wrote The life of Ronda and her children! ... Links reguarding O.I. New! O.I. Network Message Board visitors since 5/17/2000 Last updated on April 27th 2003

4. NIH ORBD-NRC - Osteogenesis Imperfecta osteogenesis imperfecta. Fast Facts on osteogenesis imperfecta. Bone Densitometry in Children and Adults with osteogenesis imperfecta. http://www.osteo.org/oi.html

Osteogenesis Imperfecta Fast Facts on Osteogenesis Imperfecta Bone Densitometry in Children and Adults with Osteogenesis Imperfecta - HTML - PDF (Spanish) (Spanish) Clinical Trials Maintaining Health During the Adult Years OI Issues: Child Abuse OI Issues: Constipation OI Issues: Dental Care for Persons with OI OI Issues: Education OI Issues: Fracture Management OI Issues: Genetics OI Issues: Hearing Loss OI Issues: Nutrition OI Issues: Obstetric Considerations for Women Without OI "NEW" OI Issues: Osteoporosis OI Issues: Pain Management OI Issues: Pregnancy Considerations for Women With OI "NEW" OI Issues: Psychosocial Needs of the Family OI Issues: Surgical Considerations OI Issues: Understanding Type I OI Planning for Post Surgical Care for Children With OI "NEW" Rodding Surgery in Children with Osteogenesis Imperfecta Talking With Your Orthopedist: A Guide for Persons With OI Talking With Your Primary Care Doctor: A Guide for Persons With OI Understanding the Structure of Bone in Osteogenesis Imperfecta ... What People With Osteogenesis Imperfecta Need to Know About Osteoporosis For additional information on Osteogenesis Imperfecta contact: Osteogenesis Imperfecta Foundation 804 W. Diamond Avenue, Suite 210

5. Página En Español Sobre Osteogénesis Imperfecta Página en español sobre osteogenesis imperfecta, también conocida como la enfermedad de los huesos de cristal Osteogénesis. imperfecta. Qué es la osteogénesis imperfecta Mi hijo Pablo tiene http://www.angelfire.com/de/osteogenesis

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6. The Osteogenesis Imperfecta Clinic At Kennedy Krieger Institute The osteogenesis imperfecta Clinic at Kennedy Krieger Institute comprises an interdisciplinary team of medical professionals providing treatment and research for individuals with OI. http://www.osteogenesisimperfecta.org/

Home OI News Clinic Staff ... You Can Help Osteogenesis Imperfecta An estimated 50,000 people in the United States live with osteogenesis imperfecta (OI), a genetically-based skeletal disorder characterized by abnormally brittle bones. Despite its prevalence and frequently severe effects, many people don't know this disorder exists. In fact, some parents who are not aware that their child has OI, have been accused of child abuse when they are unable to explain the cause of their child's fractures. What causes OI? OI originates from a mutation in one of the two genes responsible for making Type 1 collagen, the protein of connective tissue, cartilage and bone. As a result of this mutation, affected individuals develop either collagen of poor quality or an insufficient amount of collagen. Both conditions cause brittleness of the bones. How severe is OI? Because of the extreme variability of the disorder - OI is classified into four types based on symptoms and etiology (gene mutation versus heredity) - its severity varies widely from case to case. Individuals with OI can experience as few as ten fractures in a lifetime or several hundred. They may be completely ambulatory or they may rely entirely on a wheelchair for mobility. Persons with a mild form of the disorder may not discover they have OI until later in life. Some cases of OI begin to affect individuals even before they are born. In these instances, trauma to the skull during delivery can lead to brain damage or stillbirth. What is life like for individuals with OI?

7. Osteogenesis Imperfecta Federation Europe - OIFE Home Page Information on osteogenesis imperfecta http://www.oife.org/

8. Index Of /~sturm My name is Carone Sturm, I live in Fairbanks Alaska, and my son, Jojo, has osteogenesis imperfecta. http://www.ptialaska.net/~sturm/

Index of /~sturm Name Last modified Size Description ... Parent Directory 08-Jul-2003 12:32 - Alane.gif 21-Oct-1996 21:19 3k Basilar_impression.html 23-Mar-1996 20:03 8k Broken_bone.gif 12-Mar-1996 15:40 13k Erin.gif 10-Mar-1996 15:37 32k Erin.html 27-Nov-1997 22:46 2k Indexx.html 25-Oct-2002 08:33 1k JoJo_baby.html 29-Mar-1996 20:24 1k JoJo_couch.gif 07-Mar-1996 13:30 43k JoJo_with_lunchbox.gif 07-Mar-1996 13:31 56k OI_JoJo.html 23-May-1999 09:58 8k OI_JoJo2.html 23-May-1999 09:49 8k OI_JoJo_text.html 07-Mar-1996 13:31 4k OI_mail_list.html 12-Mar-1996 15:40 1k Victorian_conf.html 12-Mar-1996 15:24 6k about.html 27-Dec-2003 12:19 1k abuse.gif 20-Mar-1996 18:04 22k abuse.html 30-Mar-1996 08:56 23k alane.gif 21-Oct-1996 21:22 1k article.html 27-Dec-2003 12:22 1k backbutton.gif

9. Osteogenesis Imperfecta Hub Links to overviews, clinical trials, images, research articles and abstracts for osteogenesis imperfecta. osteogenesis imperfecta by the Arthritis Foundation. http://www.genomelink.org/osteogenesis/

Osteogenesis imperfecta is a genetic disease of bone, caused by mutations in a gene for type I collagen. On this hub page, you will find reviewed and categorized links about Osteogenesis imperfecta. Acne Allergy Antibiotics Antioxidants ... Wedding Overviews - General Osteogenesis Imperfecta - from the University of Maryland Medicine. Osteogenesis Imperfecta by Johns Hopkins University Department of Orthopaedic Surgery Osteogenesis imperfecta by the Arthritis Foundation Osteogenesis Imperfecta by Catholic Healthcare West Fast Facts on Osteogenesis Imperfecta - by Scott B. Neff, D.O., William R. Boulden, M.D., Central Iowa Orthopaedics. Osteogenesis imperfecta - from Florida Birth Defects Registry. What Is Osteogenesis Imperfecta - by U.K. O.I. Foundation. Growth Hormone Therapy in Osteogenesis Imperfecta Osteogenesis Imperfecta - 32-week stillborn male fetus - by Ariane Staub Neish, MD, Carl S Winalski, MD, BrighamRAD. Osteogenesis imperfecta - Current perspectives and treatment - by Nick Bishop MBChB MRCP MD FRCPCH, Professor of Paediatric Bone Disease, University of Sheffield, Division of Child Health, Sheffield Children’s Hospital. Dual-Energy X-ray Absorptiometry (DEXA) in Osteogenesis Imperfecta - by Richard W. Kruse, D.O.,H. Theodore Harcke, M.D., Caitlin Minch, Milan Moore, M.D., Alfred I. duPont Institute, Wilmington, Delaware USA.

10. Osteogenesis Imperfecta osteogenesis imperfecta. This information was provided by the Spokane Shriners Hospital osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily http://www.shrinershq.org/patientedu/oi.html

Home Shrine Shriners Hospitals Hospital Directory ... Next Osteogenesis Imperfecta This information was provided by the Spokane Shriners Hospital 911 W. 5th Avenue Spokane, Washington 99210-2472 Telephone (509) 623-0400 Definition Osteogenesis Imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. There are at least four distinct forms of the disorder, representing extreme variation in severity from one individual to another. For example, a person may have as few as ten or as many as several hundred fractures in a lifetime. Prevalence While the number of persons affected with OI in the United States is unknown, the best estimate suggests a minimum of 20,000 and possibly as many as 50,000. Diagnosis Most forms of OI are caused by imperfectly formed bone collagen, the result of a genetic defect. Collagen is the major protein of the body's connective tissue and can be likened to the framework around which a building is constructed. In OI, a person has either less collagen or a poorer quality of collagen. Clinical features The characteristic features of OI vary greatly from person to person and not all characteristics are evident in each case; however, the general features of OI, which vary in characteristics as well as severity, are:

11. Osteogenesis Imperfecta osteogenesis imperfecta. Ariane Staub Neish, MD. Carl S Winalski, MD. July 25, 1995. Presentation. 32week stillborn male fetus. Imaging Findings. Anteroposterior radiograph. Lateral radiograph http://brighamrad.harvard.edu/Cases/bwh/hcache/76/full.html

Osteogenesis Imperfecta Ariane Staub Neish, MD Carl S Winalski, MD July 25, 1995 Presentation 32-week stillborn male fetus Imaging Findings Anteroposterior radiograph Lateral radiograph Plain radiographs (anteroposterior and lateral views) of the fetus indicate the following: Skull: Minimal mineralization at the skull base only. Long Bones: General demineralization; short, telescoped long bones secondary to in utero fractures. The provisional zones of calcification are preserved (ends of long bones are sharp). Ribs: Beaded appearance secondary to multiple fractures. Diagnosis Osteogenesis imperfecta (OI) Discussion This combination of findings is diagnostic of osteogenesis imperfecta (OI) type II. OI is an inherited disorder of collagen maturation which results in abnormal skeletal, ligament, skin, sclera, and dentin formation. The four major clinical criteria are osteoporosis blue sclerae dentingenesis imperfecta premature otosclerosis Two of these clinical criteria are needed for the diagnosis. Classification of Osteogenesis Imperfecta: (1) Type Mode of Inheritance Description I Dominant Mild fragility without deformity, short stature

12. SVOI / ASOI: Osteogenesis Imperfecta In Switzerland Bietet umfangreiche Informationen ¼ber die Erkrankung von den Symptomen ¼ber Vorkommensh¤ufigkeit und genetische Ursachen bis hin zur Therapie und zum Umgang mit erkrankten Kindern. Weiterhin werden die Vereinsaktivit¤ten dargestellt, auf Termine und Aktuelles wird hingewiesen. Das Vereinsorgan Infoblatt steht im PDFFormat bereit. http://www.svoi-asoi.ch/

Homepage SVOI-ASOI Willkommen bei SVOI! Schweizerische Vereinigung Osteogenesis Imperfecta Bienvenue chez ASOI! Association Suisse Osteogenesis Imperfecta Deutschsprachige Website Behinderung , unsere Vereinigung und unsere English infos The English part of our website only features few infos a.t.m., with focus on OI in Switzerland. Ici vous trouvez des informations Kontakt mit SVOI WIEDMER MEDIA E-Mail an Webmaster ... Contacte avec ASOI

13. DFOI Bindev¦vssygdommen med medf¸lgende knoglesk¸rhed. Om foreningen, vejledere, litteratur, aktiviteter og links. http://hjem.get2net.dk/dfoi/

14. Osteogenesis Imperfecta Resources gathered by the mother of a child with the diesase. Includes a personal page about her son Jojo, his disease, treatment, and progress. http://www.ptialaska.net/~sturm/indexx.html

October 2002: Visitors: please note...this site is ANCIENT! I'll update links one of these days. Go here for information about Pamidronate, an effective therapy for kids with OI. Welcome to my OI Home Page! My name is Carone Sturm, I live in Fairbanks Alaska, and my son, Jojo, has osteogenesis imperfecta. The following sites are some that I have found while surfing for information about OI, or "brittle bone disease." This web page is not affiliated with any official organization; it's simply a collection of information you may find of interest. You'll find my son's story under " Jojo Sturm " below. Please let me know if you'd like to include information about yourself here...sharing information is what it's all about! Send me an e-mail at sturm@polarnet.com. Organizations OI Resources Listserver ... Child Abuse Issues Organizations The Osteogenesis Imperfecta Foundation The most active OI organization in the United States, the OIF's goal is to improve the quality of life for individuals affected by OI through research, education, awareness and mutual support. Lots of good information here! European Osteogenesis Imperfecta Organizations Hop the globe and visit the European Osteogenesis Imperfecta Foundation . Countries included here are Norway Germany France and Italy.

15. Deutsche Gesellschaft Für OI Betroffene E.V. Die Interessenvereinigung stellt ihre vielf¤ltigen Aktivit¤ten dar und informiert ¼ber Mitgliedschaft und Spendenm¶glichkeiten. Neben Informationen ¼ber die Erkrankung finden sich œbersichten ¼ber Ansprechpartner aus verschiedenen Bereichen und verf¼gbare Literatur sowie ein Forum. In OIOnline gibt es umfangreiche Dokumentationen und Berichte zum Thema, aber auch Unterhaltsames. http://www.oi-gesellschaft.de/

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16. Osteogenesis Imperfecta osteogenesis imperfecta information and links to national and international support groups, clinics with genetic counselors and geneticists osteogenesis imperfecta. osteogenesis imperfecta Foundation, Inc. ( OIF Forening for osteogenesis imperfecta, Norwegian osteogenesis imperfecta Foundation. osteogenesis imperfecta http://www.kumc.edu/gec/support/osteogen.html

Osteogenesis Imperfecta Osteogenesis Imperfecta Foundation, Inc. (OIF) 804 W. Diamond Avenue, NW, Suite 210 Gaithersburg, MD 20878 Phone: 1-800-981-BONE or (301) 947-0083 Fax: (301) 947-0456 Web site: http://www.oif.org/ E-mail: bonelink@aol.com Osteogenesis Imperfecta Federation Europe (OIFE) Also See: National organizations genetic conditions or birth defects American Academy of Orthopaedic Surgeons The Bones Page , H Plotkin, Shriners Hospital, Montreal Center for the Study of Genetic Bone and Joint Disorders , Case Western Reserve University Little People of America National Osteoporosis Foundation Norsk Forening for Osteogenesis Imperfecta , Norwegian Osteogenesis Imperfecta Foundation Osteogenesis Imperfecta , Association of Genetic Support of Australia Osteogenesis Imperfecta Hub , GenomeLink Osteogenesis Imperfecta , Brittle Bone Society Osteogenesis Imperfecta: heredity and genetics F Matsen, Department of Orthopaedics, University of Washington, Seattle, USA Osteogenesis Imperfecta Mailing List Short Stature and Dwarfism Shriners Hospital Directory Wheeless' Textbook of Orthopedics Family / Individual's Web Sites: Osteogenesis Imperfecta Information on the Internet , family page with links to organizations, resources, listserv, newsgroups, individual and family pages , research, equipment, child abuse issues Peterson Family Page , OI To locate a genetic counselor or clinical geneticist:

17. Osteogenesis Imperfecta a CHORUS notecard document about osteogenesis imperfecta Feedback. Search. osteogenesis imperfecta. " brittle bone disease" abnormalities of collagen/collagen presenile deafness. dentinogenisis imperfecta. wide sutures + Wormian bones http://chorus.rad.mcw.edu/doc/00296.html

CHORUS Collaborative Hypertext of Radiology Musculoskeletal system Feedback Search osteogenesis imperfecta "brittle bone disease": abnormalities of collagen/collagen production Type I autosomal dominant age at presentation: 2-6 years Type II (congenital lethal OI) autosomal recessive pre or perinatal death (pulmonary hypoplasia) Type III (severe prograssive OI) autosomal dominant marked progressive limb and spine deformity Type IV autosomal dominant most mild form demineralization, cortical thinning multiple fractures with pseudoarthrosis exuberant callus formation blue sclerae presenile deafness dentinogenisis imperfecta wide sutures + Wormian bones Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 26 May 2004 Medical College of Wisconsin

18. Osteogenesis Imperfecta Pedersen family shares the story of their daughter's birth with 2 broken arms and how they have coped with brittle bone disease. http://www3.bc.sympatico.ca/orp/oi.html

Osteogenesis Imperfecta And Dani-Lee Hi, We are Ole and Elsa. We are Dani-Lee's parents and we would like to share some of our story with other parents who have children with Osteogenesis Imperfecta like our Dani-Lee. When Dani-Lee was born she was given two weeks to live; we were told she would never crawl, sit up, stand up or walk. Well that was in 1986; although, it has been a struggle at times Dani-Lee is very much alive and under the circumstances doing quite well, thank you. Dani-Lee was born with two broken arms (caused by being turned in the womb because she was breach)and due to the doctors diagnosis of a short life expectancy her arms were not casted but instead wrapped across her chest. This caused the bones in her arms to grow together even more out of shape than her legs. She also had severe bowing of the limbs, an enlarged head and a crooked spine. We didn't believe the diagnosis at the time - partly because no tests had been done, but mostly because we didn't belive our baby was going to die. From that day on we embarked on a long journey, facing roadblocks of misinformation and the frustration that often goes hand in hand with a child that suffers from the little known "OI".

19. Osteogenesis Imperfecta Organization. Parents' stories about finding out their children had the disorder. Some of them were accused of abusing their child. http://oio.8k.com/

Free Web site hosting - Freeservers.com Web Hosting - GlobalServers.com Choose an ISP NetZero High Speed Internet ... Dial up $14.95 or NetZero Internet Service $9.95 E-mail us for anything. s="na";c="na";j="na";f=""+escape(document.referrer) Welcome to the Osteogenesis Imperfecta Organization. This page will try and help families with children or themselves that have Osteogenesis Imperfecta A.K.A OI. Please use this site for what it is worth. We are just here to shed a little more light on what you may already know about OI. We will also have links, Resources and more to help you and your loved ones through OI. Please enjoy the site. Any questions or comments you would like to make or send. Please feel free to send them to us. Please use the links to the Left to start you search on the OI information we have. Home OI Info OI v Abuse OI Links ... Need Help?

20. Osteogenesis Imperfecta - Learn More From MedlinePlus Find the latest news stories, overviews, research and more on osteogenesis imperfecta from MedlinePlus, the National Library of Medicine's consumer health site. http://rdre1.inktomi.com/click?u=http://www.nlm.nih.gov/medlineplus/osteogenesis

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