History of Die Deutsche Gesellschaft für Osteogenesis Imperfecta - Betroffene
The German OI-association owes its existence to the initiative of a single person, Peter Radtke, philologist and actor.
On his initiative and following the example of similar groups in England and France the first meeting took place in June 1983 in Southern Germany. Participants were more than 40 OI-people and their families and some doctors. And even then already a handful of international observers from Switzerland and France were present. First preparations for the start of an association were done, a press release was prepared and contact persons for different regions nominated. A film about the Brittle-Bone-Society showed how that first organization had started.
In the weeks following this meeting press releases were published and for the following year we got so many more registrations that the second annual meeting had to be organized in a much bigger hotel. In July 1984 the German association was founded with 54 members.
The new board and further active members worked incessantly and in the same year the first newsletter and predecessor of the journal „Durchbruch“ (= “breakthrough”) was published.
Since then 26 years went by: nowadays families that are confronted with the diagnosis of „OI“ can easily access all kinds of helpful information from the internet, publications and with the support of competent and helpful ot
her families or specialists.
Some years later the first of now six regional OI associations were founded. They now offer their own meetings and organize events.
The German OI-association is a member oft he ACHSE, the national umbrella organisations for rare and chronic disorders, and of the OIFE and it has many contacts to clinics, national and international partners. For some years now we have an office with a part-time secretary and an lively exchange of our members in an internet forum.
A big national conference, workshops and special trainings for physiotherapists, teachers, parents and other groups were organized and on the level of the smaller organisations a lot of social activities and personal exchange, like for example the national youth weekend, are offered.
Many of the about 1000 members in Germany will share the feeling that we are all connected by something special, that we share certain experiences, fears, feelings and a special way of living with each other. To these we do not need to explain much in order to be understood.
And at many of our events we experience that even for most new members it is very easy to be accepted and to feel welcome in such a tightly connected old “OI-family”.
Living with OI has its challenges – and sometimes quite a bit of those – but it can as well connect people, lead to friendships and in some cases to marriages. And these OI-contacts do often easily overcome barriers from characteristics like height, age, nationality or language.