Osteogenesis Imperfecta (OI) Links I've Found on the Web

• General Resources
• Medical Resources
• By and About People with OI
• Other stuff

General Resources

• The USA's Osteogenesis Imperfecta Foundation, Inc.
• International OI foundations: Europe, Australia, Belgium, Brazil, France, Germany, Italy, Israel, Japan, Kuwait, Norway, Peru, Poland, United Kingdom, another in the United Kingdom, ``Family Village''
• The Canadian Osteogenesis Imperfecta Foundation apparently doesn't have a web page, but can be contacted at:
  128 Thornhill Cres., Chatham, Ontario N7L 4M3, Canada
  Phone: 51(9-4) 36--0025 Fax: 51(9-3) 51--4043
  e-mail: marylouk@usa.net
• OI discussion groups (e-mail and web-based):
  • Here is information about the first OI electronic mailing/discussion list I knew about. To subscribe to the list, send mail to majordomo@dstc.edu.au with the text subscribe oi in the body of the message. It has an associated archive that is extremely useful and informative. It also contains information for suscribing to the list. To search the archive, go to a search engine (such as www.google.com and enter site:www.dstc.edu.au [OI] followed by any search keywords you want.
  • Groups on YahooGroups.com:
    • OI_Group. A general discussion group.
      To subscribe, send a message to OI_Group-subscribe@yahoogroups.com.
      To post, send messages to OI_Group@yahoogroups.com.
    • Brittlebones. A general discussion group.
      To subscribe, send a message to Brittlebones-subscribe@yahoogroups.com.
      To post, send messages to Brittlebones@yahoogroups.com.
    • Osteogenesis_Imperfecta. The International Rare Diseases Support Network's support group for people with OI.
      To subscribe, send a message to Osteogenesis_Imperfecta-subscribe@yahoogroups.com.
      To post, send messages to Osteogenesis_Imperfecta@yahoogroups.com.
    • OIparents. For parents of children with OI.
      To subscribe, send a message to OIparents-subscribe@yahoogroups.com.
      To post, send messages to OIparents@yahoogroups.com.
    • OI_adults. Frank and practical discussion for people 18 and over.
      To subscribe, send a message to OI_adults-subscribe@yahoogroups.com.
      To post, send messages to OI_adults@yahoogroups.com. Also see the Adults with OI club on Yahoo.
    • OIsingles. Where single people can meet and get to know each other.
      To subscribe, send a message to OIsingles-subscribe@yahoogroups.com.
      To post, send messages to OIsingles@yahoogroups.com.
    • NFOI. For everyone with OI in Norway, or norwegian people that live elsewhere in the world.
      To subscribe, send a message to NFOI-subscribe@yahoogroups.com.
      To post, send messages to NFOI@yahoogroups.com.
    • OI_Canada. For Canadian patients, family, educators and medical professionals interested in OI.
      To subscribe, send a message to OI_Canada-subscribe@yahoogroups.com.
      To post, send messages to OI_Canada@yahoogroups.com.
    • OIAustralia. Support discussion group for Australians with OI.
      To subscribe, send a message to OIAustralia-subscribe@yahoogroups.com.
      To post, send messages to OIAustralia@yahoogroups.com.
    • OIF-talk.
      To discuss the OI Foundation.
      To subscribe, send a message to OIF-talk-subscribe@yahoogroups.com.
      To post, send messages to OIF-talk@yahoogroups.com.
  • The OI Support Network on MSN contains a message board, chats, links to OI-related resources, personal web pages, and photo albums.
  • The Christians with OI group. To join, contact: little_one4ever@hotmail.com
  • The Usenet discussion group alt.support.osteogenesis.imperfecta
• Here is a (in PostScript or PDF format) of OI references compiled by Denise Fastrup for the Danish OI Society's website. And here is another set of references that Glenda Millgate posted to the discussion list. Both of these bibliographies are a bit out of date and incomplete, but certainly are useful pointers for further reading.

Medical Resources

• This Osteoporosis Resources page has some information relevant to OI.
• ProtectOurFamilies.com was set up as a resource for people who have been falsely accused of child abuse (with a focut on OI).
• A short but interesting note from The British Medical Journal (from July 28, 1900) about dark sclerae and OI.
• Life expectancy for people with OI. See also this paper.
• This clinical trials page is sponsored by the NIH, and provides searchable access to ongoing and planned clinical trials.
• Searchable datbases of articles:
  • Medscape (free, though you have to register to use it)
  • National Library of Medicine's MEDLINEplus
  • HealthGate
• Here is a useful, bot NOT comprehensive reference list of OI research articles.
• There is an article and related editorial in the New England Journal of Medicine about a clinical Pamidronate trial of by Dr. Francis H. Glorieux et al. Also, there is a brif comment with pictures about blue sclerae.
• Pamidronate Treatment of OI: An Overview and Alendronate Trial
• The Canadian Medical Association
• DEXA Scanning, Bone Mineral Density Assessment.
• Norian, an injectable bone cement useful for supporting healing fractures.
• Osteogenesis Imperfecta page at the University of Washington Department of Orthopaedics and Bone and Joint Center. There is also a UW Pathology Faculty Profile of Peter H. Byers, MD whose research include characterization of mutations in type I collagen genes that give rise to forms of OI.
• The NORD (National Organization for Rare Disorders) has a searchable database that includes information on OI
• The ORBD~NRC (Osteoporosis and Related Bone Diseases~National Resource Center) has a page about Osteogenesis Imperfecta.
• This is the OI Section of Wheeless' Textbook of Orthopaedics (see also the WorldOrtho, the ``Ultimate Orthopaedic and Sports Medicine Website'').
• Pediatric Imaging Teaching Files from Case Western University / University Hospitals of Cleveland / Rainbow Babies and Children's Hospital.
• Results from a clinical study (of 23 people with OI) of correlations between various clinical/radiological features and ambulatory ability.
• Dr. Horacio Plotkin at McGill University provides the Bones Page about OI with current developments and links. The hospital there has an OI clinic that is currently studying 150 OI patients.
• Here is the OI Section of the Yahoo Health pages, which I think they got from Dr. Green's OI page.

Personal Webpages of and About People with OI

• Sean Stephenson
• Don Barrie and a neat set of photos of him with all sorts of famous folks.
• Bonnie
• April Brazier
• Dyke family
• Daniel Grund
• Stephen McIver
• Sharon-Anne
• Hannah
• Suzette Nel
• Chad McDaniel
• David
• Melissa
• Baby Jonathan's OI Page
• Dee Dee's Place for her neice Tiara.
• Sean Garrison
• The Mannduca family and also here.
• Melissa, a.k.a. wheeliechick
• James Capone's OI Organization website
• AP story about mis-allegations of child abuse against the Copelands
• Jessica Pelasky's newsletter The Whole Shebang
• A Connective Tissue Disorder webpage by Sandy Simmons
• You can subscribe to the Brittle Bone Trap List", a forum for those families who have been unjustly accused of child abuse because of OI
• Mona
• John Crumrine has started an osteogenesis imperfecta club. Speaking of clubs, check out the disabled artist club
• Many personal homepages as listed by the OI Foundation in Germany.
• K. C. Morlock has a varied webpage from disability issues to vegitarianism to homeschooling to science to fiction to...
• The Roberts family includes stories and photos of adopting international children with OI (here is their old link).
• JoJo Sturm
• Andrew Berry is developing a webpage of IO resources, and also manages the OI electronic mailing/discussion list
• Visit Yldheart's Abode
• Julie Hocker
• Dani-Lee
• Sabrina Frangetti (she has another page here) has established this OI Network
• Duo Dave - aka David Good

Other OI-related Stuff

• HalfThePlanet.com supplies information, products, and services for people with disabilities, families, friends, co-workers, employers, manufacturers, distributors, service providers, educators, legislators, regulators and advocates.
• The e-mail address for the spanish-language OI list is: osteogenesis@onelist.com
• The story of the Amer family. Their children were taken away by the Department of Social Services for alleged abuse, in spite of the evidence that OI may have been the reason for the ``signs of abuse''.
• U. S. Access Board (a.k.a. the Architectural and Transportation Barriers Compliance Board) provides information for accessibility for people with disabilities.
• A movie about a fellow from India with OI called Sixth Happiness (also listed in the IMDb and Hollywood.com.
• MCARE, the national clearinghouse on managed care and long-term services and supports for adults with developmental disabilities and their families
• Here is information about another metabolic bone disease called Hypophosphatasia
• Here is some information about children with chronic (and other) illnesses and school.