OI is a rare disease. Only 1 out of 15.000 people has OI. It exists in every part of the world. Worldwide there are about 500.000 people with OI. Most of them will live in countries where a diagnosis will not be accessible. Given the cost of a genetic test are decreasing fast, many more people will be formally diagnosed in the coming years, which will help to improve OI and connect communities to support each other.
Currently we are aware of about 40 OI-patient organisations worldwide. OIFE and OIF play an important role to help set up new OI-communities. It is their primary role, but also Care4BrittleBones is involves and supports whereever needed.
Numbers of people with OI wordwide (based on 1:15.000 prevalence):
Other Rare Bone Diseases
OI is one of the largestt rare bone diseases. Other rare bone diseases are relying on the same network and we are keen to leave nobody behind. We therefore actively network and support hands on the creation of networks with in other rare bone diseases , such as HPP, XLH, MO, FOP etc.
OI Communities around the world
Get in touch with an OI community in your region.