The Swedish OI Group
A short story about the history of the swedish OI-group of RBU
Back in 1984 it started with a pediatrician; Gunilla Värendh, and a mother of a five years old daughter with OI; Laila Bäckström. Gunilla and Laila decided to see
how big the interest was of starting an OI association. They started by contacting RBU. RBU promised to help and support their work.
RBU, (The National Association for Disabled Children and Adolecents) is a Swedish organization for disabled that works towards a vision of a fair society and a
life of development for children and adolescents with a disability. RBU has associations and members all over Sweden. In RBU families get together , that have
adolescent and young children with different disabilities, such as cerebral palsy (CP), ADHD, Spinal Dysraphism/ hydrocephalus, brittle bone disease (OI), muscle
diseases, Prader Willi syndrome, dwarfism, plexus brachialis, and multiple disabilities.
In January 1985 the first OI-group started in RBU. This working group consisted of Laila Bäckström, Viola Larsson and Gunilla Bragsjö. They are all mothers of
daughters with OI.
The group got a lot of support from the other Nordic associations.
Their first meeting was held in Stockholm. They invited representatives from “The National Board of Health and Welfare” and the “Institute for Disability”.
Together with the “Institute for Disability” they produced a number of information folders and videos about OI. They also made a film for the Swedish Television.
In the beginning they found about 35 families from the whole country who joined the OI-group.
During the years the OI-group organized many summer camps and meeting for the members.
They also joined the Nordic co-operation in the middle of the 80´s.
OI-Norden (OIN) is a co-operative organization for OI associations/societies in the Nordic countries. It started as a loose co-operation in the early 80´s, mainly
through the efforts of Lisbeth Myhre from the Norwegian OI association. In 1986 the co-operation resulted in a Nordic conference held in Denmark. Afterwards
the co-operation became more determined and in 1992 OI-Norden was officially founded with its own statues/by-laws and a board with two representatives from
each member association.
In 2002 at Annecy, France, RBU became an official member of the OIFE.
Thanks to the first working group for OI in RBU, the National OI specialist team at Astrid Lindgren’s Childrens’ Hospital was started and it’s still working very well.
Children from all over the country can go there to get medical advice and diagnosis.
last updated 6 April 2009