The Norwegian Osteogenesis Imperfecta Association (NFOI) is a national organisation for OI founded in March 1979. At the moment the organisation has about 400 members. About 170 of our members have osteogenesis imperfecta. There are about 280 known cases of OI in Norway.
NFOI is lead by a board of 8 members. The highest authority is the Annual General Meeting (AGM) which gathers around 70-100 members each year. NFOI is a member of the national non-governmental organisation Funksjonshemmedes Fellesorganisasjon (FFO) which complies of 71 organisations of and for the disabled. In total numbers these organisations gather around 335.000 members with different disabilities. NFOI directs most of its political work through FFO. NFOI is mainly run with state fundings and membership fees. NFOI is also a member of Funksjonshemmedes Studieforbund (FS).
OI is one of 7 rare diagnoses who receive services from TRS Resource Centre for Rare Disorders. The centre is part of Sunnaas Rehabilitation hospital HF in Helse Sør-Øst RHF (region), and is situated at Nesodden outside Oslo. The centre works to increase knowledge about the 7 disorders and offers guidance and councelling on medical, psychological, social and educational issues relating to the seven diagnostic groups. Individuals must have a relevant diagnosis to be eligible to register as users. TRS offers life-long services to all age groups.
In 2002/2003 a doctorate study about adults with OI was started, and it is run by TRS in co-operation with NFOI. The study is financed by Stiftelsen Helse og Rehabilitering and TRS.
Regarding dental treatment NFOI collaborates with TAKO (Dental resource centre for rare disorders).
NFOI publishes its own magazine "OI-Nytt" 3-4 times a year. In the magazine you find information about the organisation’s activities and news about OI.
NFOI has a group of peer members spread around the country. These are ordinary members who can be contacted by other members in different situations. You can call a peer member if you need someone to share your experiences with, practical advice or help. The peer members are non-professional, but are sworn to secrecy about the information they receive about other members personal information. The peer work is lead by an administrative group in co-operation with the board. This group arrange different gatherings/seminars for target groups within the
organisation. Feel free to contact one of our peer members!
NFOI has among other things the following activities for our members:
- AGM with annual meeting in spring
- One or several national meetings in fall (peer gatherings)
- Summercamps for children and youth
- Local activities (usually led by local groups)
NFOI is an active member of OI-Norden which is the Nordic umbrella organisation for OI. Trough this organisation we keep in touch with the OI-organisations in Sweden, Denmark and Finland. For this work, we receive particular fundings from the Nordic cooperative authorities. In 1996 NFOI became a member of the OIFE, which is the international organisation for people with OI.
Research and development
The NFOI AGM in 2009 and 2010 decided to end NFOI's Research Fund as a structure of its own, and transfer the funds to NFOI. The board of NFOI can now spend fund research through a newly established Research and development account. Medical professionals can apply for travel funds and fundings for smaller projecs.
The official address of NFOI is:
Norsk Forening for Osteogenesis Imperfecta
c/o Ingunn Westerheim
We can also be contacted by e-mail: firstname.lastname@example.org