Norsk Forening for Osteogenesis Imperfecta
The Norwegian Osteogenesis Imperfecta Foundation
Meny:
Summary in English
The organisation
NFOI is a national organisation for OI founded in March 1979. At the moment
the organisation has about 380 members. About 160 of our members have brittle
bones. There are about 260 known cases of OI in Norway.
Administration
NFOI is lead by a board of 8 members. The highest authority is the Annual General
Meeting which gathers around 80-100 members each year. NFOI is a member of the
national non-governmental organisation Funksjonshemmedes Fellesorganisasjon
(FFO) which complies of 68 organisations of and for the disabled. In total numbers
these organisations gather around 250.000 members with different disabilities. NFOI
directs most of its political work through FFO. NFOI is mainly run with state fundings
and membership fees.Resources
OI is one of 7 rare diagnoses who receive services from TRS resource centre
(TRS) at Sunnaas hospital. The centre offers our members and other people
with OI follow ups and councelling by phone. Other services are group stays
and individual stays for users and their families, outpatient clinics and local follow-up
by meeting users, their families and local professionals in their home environment.
TRS was established in 1992 as part of the Norwegian government's "Plan of
Action for the Disabled." TRS was initiated by user (patient) organisations.In 2002/2003 a 3 year doctorate study of 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).Newsletter
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.Peer members
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 of three members.
This group arrange different gatherings/seminars for target groups within the
organisation. Feel free to contact one of our peer members!Activities
NFOI arrange at least one large gathering each year, where all our members are
invited to participate. In addition we have local branches who have own gatherings
for members within one region.
International co-operation
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 European organisation for people with OI.Useful links
NFOI has gathered different links to webpages concerning OI and disability
both nationally and internationally. Click here for more information.Contact us
The official address of NFOI is:NFOI
Postboks 4568 Nydalen
0404 OsloWe can also be contacted by e-mail: nfoi@c2i.net