At the moment the Association has about 300 members. About half of them have OI themselves, the rest are family members, friends, doctors and other health care professionals. Anyone interested in OI can join the Association. As Finland has about 5 million inhabitants, it has been estimated that there would be about 300-350 people with OI in Finland.
The main objectives of the Association are
The Association has two meetings a year, a one-day spring meeting and a two-day autumn meeting. In addition, it organises adaptation training and rehabilitation courses for its members.
The Association gets funding from the National Lottery Association. A
smaller part of the finance comes from membership fees, donations and
selling adds to the newsletter. The funding is used mainly to pay for
the meetings and running costs. All activities are done on voluntarybasis; there is no paid personnel. The Association co-operates with other associations for rare diseases. It is a member of both OIFE (Osteogenesis Imperfecta Federation Europe) and OI-Norden, an organisation of OI associations in the Nordic countries.
About OI
Osteogenesis Imperfecta (OI) is a rare heritable disorder of the
connective tissue. The most prominent feature of OI is bone fragility.
The number of fractures can vary from a few to over a hundred.
Other possible symptoms inlude
A person with OI may show several but usually not all of these symptoms. OI expresses itself very individually. It does not affect intellectual development.
For more information on OI in English, see .