How does OI impact our lives?

A retrospective study of medical and insurance records from the USA indicates that health care costs for people with a rare condition have been underestimated and are three to five times greater than the costs for people without a rare condition. Why are we not surprised? Finding out more about direct and indirect costs related…


Psychosocial research in OI

Psychosocial network & patient centered outcomes research Interview with Dr. Kara Ayers My name is Kara Ayers. I’m primarily connected to the OI community because I have OI (Type V) myself. My husband has OI as well and we were both fortunate to grow up with the benefits of being socially connected to others in…


Report from Quality of Life 4 OI

OI is more than Fractures, Surgeries and Pain! As a currently-elected family representative by our regional OI-association comprising the states of Hessen, Saarland and Rheinland-Pfalz (Germany)-, I was honored to take part in the highly-anticipated conference ‘QUALITY OF LIFE 4 OI’ this year. The conference took place in Amsterdam from the 22nd-25th November 2019. This…

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