The Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella association for organizations dealing with the rare disease Osteogenesis Imperfecta (OI) also known as brittle bone disease. The non-profit organization was established in 1993 by six founding OI-organizations and is registered as a charity in the Netherlands.
We have more than 30 member organizations in three main categories:
- European OI-organizations (ordinary members)
- OI-organizations outside Europe (associate members)
- Supporting member organizations
- Aid organizations
- Research foundations
The OIFE does not have membership for individuals. Our ordinary member organizations operate on a national level providing support to people with OI and their families through peer activities, awareness work and support for people with OI and their families. The OI-organizations are quite different in size, financial status and priorities – but they all work to improve the lives of people with OI. Most member organizations are run entirely by volunteers, but some are run by staff with support from volunteers.
Our main core of funding comes from the fees that our member associations pay annually. These fees cover the basic costs of administering the OIFE. The majority of the initiatives that we organize or participate in require additional funding, which we try secure through various sources. At the moment our financial situation does not allow us to hire staff, so all our work is done by volunteers.
OIFE is a member of EURORDIS – the umbrella organization for rare disease organizations in Europe.