The Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella association for organizations dealing with the rare condition Osteogenesis Imperfecta (OI) also known as brittle bone disease. The federation was established in 1993 by six founding OI-organizations and is registered as a nonprofit in the Netherlands.
Because of logistical reasons, OIFE was reestablished in Belgium in 2022 by four founding organizations and is now registered as a nonprofit in Belgium.
We have more than 35 member organizations in three main categories:
- European OI-organizations (ordinary members)
- OI-organizations outside Europe (associate members)
- Supporting member organizations (Aid organizations, Research foundations)
OIFE is a member of EURORDIS – the umbrella organization for rare disease organizations in Europe and the European Rare Bone Forum (ERBF).
Our main core of funding comes from the fees that our member associations pay annually. These fees only cover the basic costs of administering the OIFE. At the moment our financial situation does not allow us to hire staff, so all our work is done by volunteers.
The majority of the initiatives that we organize or participate in require additional funding, which we try to secure through various sources like donations, research grants as well as grants from industry.
OIFE accepts financial and non-monetary support with the mutual understanding that OIFE maintains its independence and makes choices based exclusively on the needs of people with OI. Our aim is that less than 50% of our funding should come from the pharmaceutical industry.
OIFE is in 2023 supported by