Who are we?
The Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella association. Its membership consists of national and sub-national organisations which, in one way or another, support people living with Osteogenesis Imperfecta (OI). The OIFE was established in 1993 by six founding OI societies as a non-profit organisation and is registered as a charity in the Netherlands.
To date, the OIFE consists of more than 25 member organisations. Each is represented by a delegate. These delegates form the Board of the OIFE from which an Executive Committee (EC) is chosen.
The OIFE's activities and projects are managed and staffed not only by members of the EC and delegates, but also by a number of dedicated volunteers who are responsible for certain tasks (secretary, treasurer, webmaster, youth coordinator, etc.)
The OIFE is run by volunteers. We have contacts all over the world, including over 50 OI support associations, numerous professionals and partners in the "rare disorders" community.
Networking, solidarity and cooperation are our strongest values; we are experts in and advocates for our health condition.
It is therefore vital that we cooperate closely with a multitude of people living with OI, their families, medical professionals, researchers, and other professionals and support networks. We aim to improve the quality of life of people living with OI and strive towards equality of access to diagnosis, treatment and care.
Many people with OI live full and happy lives, despite the problems which can be caused by their condition. The OIFE's vision is that one day the policies that it encourages will allow people who are living with OI will be able to live active and independent lives in an inclusive society.