Resources- Specific Diagnosis Card Catalog- Osteogenesis Imperfecta

Who to Contact

Osteogenesis Imperfecta Foundation
804 W. Diamond Avenue, NW, Suite 210
Gaithersburg, MD 20878
Phone: 301-947-0083
Toll-Free: 800-981-2663
Fax: 301-947-0456 - fax
E-mail: bonelink@oif.org
Web: www.oif.org

The Osteogenesis Imperfecta Foundation is dedicated to helping people cope with the problems associated with OI, by improving the quality of life through education, awareness, mutual support and research into the treatment and potential cure of the disorder. They have local chapters and provide assistance to persons wishing to start a support group in their locality. Additionally, the Foundation provides parent-to-parent matching.

The Foundation publishes a quarterly newsletter, Breakthrough, and brochures including, "The Education of a Child with Osteogenesis Imperfecta," in English and Spanish, "The Care of a Baby and Child with Osteogenesis Imperfecta,""OIF General Information," and "I Have OI and Can....". They also have a new parent packet that is available at no cost. OIF has a bibliography of books and articles, a lending library, and books and videos that are for distribution, books include, "Living with Osteogenesis Imperfecta: a Guidebook for Families," and videos include, "The OI Newborn: A Loving Look at the Future Within Reach."

OIF collects information on physicians and researcher who treat/study the condition and disseminate this information to its members. They provide referrals to other resources and providers.

Where to go to Chat with Others?

OI Mailing List
The OI mailing list is for the discussion of any issues relating to OI (osteogenesis imperfecta or brittle bones) It serves the needs of both medical professionals and families affected by OI.

brittlebones
This is a place where those who have Osteogenesis Imperfecta or know those who have this condition can meet, share ideas, support, and suggestions.

OI_ADULTS
For people who are at least 18 and have Osteogenesis Imperfecta

Learn More About It

Osteogenesis Imperfecta - Medline Plus

Fast Facts on Osteogenesis Imperfecta

Caring for Infants & Children with OI

Links

Osteogenesis Imperfecta Foundation Web Site

Osteogenesis Imperfecta Federation Europe (OIFE)

O.I. Network