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25 years of OIFE – how it all began

OI exists all over the world and the success story of the international OI community and the OIFE started on three continents at the same time more or less. But without the wonderful and easy exchange of knowledge and support that we can have today.

As we all heard many times this year, everything began in the UK, where in 1961 an OI baby was born to Margaret and David Grant. Maggie Grant has type I OI herself and – as she did not find any information during the following years – she placed an article in the Sunday Post newspaper and this was the start of the Brittle Bone Society and what is thought to be the world’s first support organization for people with OI.

Prior to this, in the USA Michael Geisman had been born in April 1956 and his mother Gemma shared Margaret Grant’s despair and her determination and founded the OIF in 1970.

And in Australia a young geneticist called David, started his first study about „Osteogenesis imperfecta“ and later became famous for his „David-Sillence-OI-classification“ (published in 1979). In 1977 the Australian OI society had been founded.

The first Scientific OI-Conferences took place in 1981, 1984 and 1987 in Chicago/USA on initiative of very few American doctors and in cooperation with Gemma Geisman, founder of the US OI Foundation (OIF).

The idea to set up some kind of European Osteogenesis Imperfecta umbrella organisation was born in September 1990 in Salice Terme, Italy. A few OI families from several European countries (like Serbia and the Netherlands) had brought their children and accidentally met with some Italian families, observing the 4th International Scientific Conference on OI nearby Pavia.

Marcella Zingales (IT) and Rob van Welzenis (NL) had met there for the first time and were both so happy to exchange similar experiences with the “OI-vacuum” in their respective countries that they had the immediate idea to start a European network very soon. From the very beginning this was supported and encouraged by Margaret Grant and Dr. Colin Paterson from the BBS office here in Dundee!

The inaugural table cloth

In winter 1991 Rob & Lidy had invited 3 representatives from AOI (France) to their home in the Netherlands and they all discussed the necessary basic questions like a name for the federation, and its structure. Rob had created the OIFE logo and prepared a first draft for its future statutes.

And already in October 1992 the Dutch OI society VOI (*1983) organized a follow up meeting with 21 representatives from 9 international OI organizations (including the OIF from the US) in Woudschoten, near Utrecht,NL.

It was decided to set up a European Federation and a provisional Executive Committee, lead by Rob van Welzenis, was installed. After a busy year AGM 1 took place only one year later, on 31st Sept 1993 in Northampton/UK (while the 5th SC was held nearby Oxford).

The inauguration of the “Osteogenesis Imperfecta Federation Europe” (OIFE) became a fact. Delegates and observers from 9 countries discussed the structure and the future tasks of this new umbrella and delegates of six OI associations (NL, F; I, D, DK; UK) accepted and signed the foundation charter. An Executive Committee under the presidency of Rob van Welzenis was installed. The OIFE was legally established as a non-profit-society on May 31th 1994 in the Netherlands.

Friends across borders

As many of you know and have experienced for years and again this past weekend with old and new friends from so many parts of Europe and the world, the OI-community has come a long way and we were and are successful and so important on many different levels.

Probably most of us feel that the OIFE has given them an extra huge and loving OI-family, where mutual support comes natural and overcomes limits and borders of all kinds – so much more is possible if you belong to this group full of solidarity and understanding.

Written by Ute Wallentin