Osteogenesis Imperfecta Foundation, Inc.

A nonprofit organization

20 donors

The Foundation's mission is to improve the quality of life for people affected by OI through research to find treatments and a cure, education, awareness, and mutual support.


OI is such a rare condition that most people have never heard of it. Most doctors and nurses have never seen OI with their own eyes, only in medical texts.

 Sophia was the first baby with OI that her local hospital had seen in 20 years. Her x-rays after delivery lit the whole screen with new and healing fracture sites. Until she was four, Sophia could not sit up because it hurt too much. She required supplemental oxygen to breathe. Her parents, Cathy and Robert, faced a common dilemma among OI families, “When your own doctor doesn’t know about OI, where do you turn?”

Robert and Cathy turned to the OI Foundation (OIF). Through the OIF Information Center, they could search online, find OI Centers of Experience and medical experts, and receive pamphlets and printed resources. These frightened, concerned parents and their doctors learned of drug therapies and rodding surgery that have helped Sophia not only sit up, but crawl on her own!

“I don’t know where we would have been four years ago without the OI Foundation,” remembers Robert. “If there is going to be a cure, it will likely come from the groundwork laid by the OI Foundation.”

Sophia’s story is just one example of how we can help. With your support, we can do so much more.

Organization Data


Organization name

Osteogenesis Imperfecta Foundation, Inc.

Tax id (EIN)





(301) 947-0083