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: http://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.