Osteogenesis Imperfecta

Disability/Illness Description:

Osteogenesis Imperfecta (OI), commonly known as “brittle bone” disorder is a genetic disorder characterized by bones that break easily, often with little cause. People with OI may also have teeth problems (dentinogenesis imperfecta), and hearing loss when they are adults. People who have OI may also have muscle weakness, loose joints (joint laxity) and skeletal malformations.

Associations/Groups:

Osteogenesis Imperfecta Foundation
An organization founded and managed by people with osteogenesis impertfecta and parents of people with OI. The Foundation publishes “Breakthrough” (a quarterly newsletter); provides literature and videos upon request; holds national conferences, local and regional meetings; has a peer contact network; and accepts contributions to support education, awareness, and research.
804 West Diamond Avenue, Suite 210
Gaithersburg, MD 20878
Phone: 301-947-0083 or (844) 889-7579
Fax: 301-947-0456
Massachusetts support: 781-326-7500 x3355 (Main group) or 508-292-0562 (South Shore Group)
Email: bonelink@oif.org

Children’s Brittle Bone Foundation
7701 95th Street
Pleasant Prairie, WI 53158
Phone: 773-236-2223
Fax: 262-947-0724

Other Information:

What is Osteogenesis Imperfecta?

Osteogenesis Imperfecta in Children

Learning About Osteogenesis Imperfecta – National Human Genome Research Institute

Osteogenesis Imperfecta – American Association of Orthopedic Surgeons

 

Fact Sheet last updated on: 12/14/2016