The Finnish OI Association
traces its roots to a newspaper article about a young boy with OI.
After reading the article, parents of other OI children and several OI adults contacted his family.
The first meeting of the association on the 25th of November 1979 in
Nuutajärvi was attended by 50 people from all over the country. The
youngest founding member was just three months old. In the meeting
many OI children’s parents and people with OI met others afflicted
with OI for the very first time. Docent Ilkka Kaitila also held a
lecture on OI. A board of experts that was gathered to support the
Association also included Drs. Risto Penttinen and Helena Ranta.
The most important goals of the association were determined to be
spreading information on OI and OI research, treatment options, social
services etc. Information would be distributed to OI families,
doctors, other medical care personnel, different authorities,
disability organisations and to the public at large. A year after its
founding the association had 133 members, 58 of whom had OI.
Throughout its history, the association has operated on a completely
voluntary basis, fuelled by a strong sense of community among our
members. In the early years the association organised charity sales
and lotteries for which prizes were obtained from sponsoring
companies.
The association newsletter Hauraat Luut ("fragile bones") was
published for the first time in 1980.
Currently, the main activities of the association focus on organizing
rehabilitation courses and distributing information through our
newsletter and website and on a person to person basis. Two meetings
are held annually, with the one in the autumn typically being a
two-day one. These meetings allow people with OI to get to know each
other and discuss their condition. This kind of an informal and active
peer support network is probably the most important asset our
association has to offer.
last updated 1 September 2008