Osteogenesis Imperfecta Foundation
The Osteogenesis Imperfecta (OI) Foundation is the only voluntary national health organization dedicated to providing resources and information to individuals, families, doctors and researchers who are impacted by osteogenesis imperfecta (OI), a genetic bone disorder characterized by fragile bones that break easily.
Two full-time staff members respond to phone, email, and web requests for information from constituents with OI, their families, and medical professionals, free of charge. Supported by our Medical Advisory Council and a network of OI clinics, the OI Foundation’s professional staff responds to individual questions about OI, treatment options, and available resources. Names and addresses of people requesting support will be recorded and documented for follow-up by staff members, including the mailing of requested fact sheets and other OI resources.
Upon request, staff members distributed existing OI Foundation fact sheets and other resources to provide accurate responses to questions. In some cases, these staff members will consult with members of the OI Foundation’s Medical Advisory Council, as these doctors are each experts in a particular area of OI care.
Lastly, staff members mail out free fact sheets and resource guides on topics of immediate interest such as dental care, OI-related hearing loss, maintaining adult health, and planning for post-surgical care.