Denosumab Treatment in Children with OI


Amgen Pharmaceutical Company is sponsoring an international clinical trial to study the effects of the drug Denosumab on bone mineral and fracture occurrence in children who have OI. Denosumab is a prescription medication that is sold under the name Prolia. It is currently used to treat post-menopausal osteoporosis through twice a year injections. Forty sites in the United States and multiple other countries will be participating in this study. Children age 2-17 years who have a diagnosis of OI Type I, III or IV are eligible for this 3 year study.

This information is provided as a service. The OI Foundation is not a sponsor of this study and did not assist in its design.


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Uniting Unbreakable Spirits Regional Conference Program


Register today for the OIF Regional Conference in Minneapolis, MN on September 12th!


OIF Regional Conferences give families across the United States the opportunity to take part in educational sessions providing information on understanding, managing and living with osteogenesis imperfecta. Mark your calendars and sign up today!


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Special Announcement: New Drug to Treat Hypophosphatasia is Available


Like osteogenesis imperfecta, hypophosphatasia (HPP) is an inherited rare bone disease that affects the development of bone and teeth. Alexion Pharmaceuticals has announced an open-label Early Access Program (EAP) in select countries (U.S., Belgium, Netherlands, France, Spain, and Russia) to provide patients who have hypophosphatasia (HPP) access to a new drug, asfotase alfa. Potential patients must have onset of signs/symptoms of HPP prior to 18 years of age, and a documented diagnosis of HPP based on lab results and HPP-related skeletal abnormalities. Although asfotase alfa is not a treatment for OI, this information is important to the rare bone disorder community because both HPP and OI are often considered during the diagnostic process when a child has recurrent fractures due to low bone density.



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2016 OI Foundation National Conference

The next OI Foundation National Conference will be held
July 22-24, 2016 at Walt Disney World's Swan and Dolphin Hotel in Orlando, FL!

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