Membership

Membership is open to bona fide OI organisations, provided they are non-political, non-religious and subscribe to the statutes and by-laws of the OIFE.
European OI societies can become ordinary or associete member, provided they have existed for at least two years.
Non-European OI Societies can become associate member only.
The only difference between ordinary and associate members is that the latter have no vote.
Any OI related organisation could be accepted as a sponsoring member.
Supporting members must support the objectives of the Federation in such a way that membership will be of mutual benefit.
In principle the OIFE has no individual members, with the exception of advisory and honorary members.
for details about the conditions for membership please contact the oife office.

Aims

To represent the interests of its members at a European level
To collect, publish and exchange information on Osteogenesis Imperfecta (OI)
To represent the problems with OI to national or supranational organisations with the intention that they may be recognised and their treatment facilitated in programmes of public health.
To promote research, surveys and investigations on the causes, treatments and effects of OI and publish the useful results of such research.
To promote public awareness of all aspects of OI.
Generally to do, or cause to be done, all things lawfully necessary to implement, promote and achieve the above aims and objectives of the Federation.

Brief History and Development of the OIFE

The idea to set up some kind of European Osteogenesis Imperfecta umbrella organisation was born in September 1990 in Salice Terme, Italy during an International OI meeting of representatives of European OI societies. This meeting was in parallel to the 4th International Scientific Conference on OI in nearby Pavia.

In October 1992 the Dutch OI society organised a follow up meeting with 21 representatives from 9 European OI organisations in Woudschoten, near Utrecht, The Netherlands. It was decided to set up a European Federation and a provisional Executive Committee was installed.

Only one year later, on 31st Sept 1993 in Northampton/UK 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 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.

In 1994 the first edition of the “Euro-OI-pass”, a travel document with emergency information in many languages is published.

In 1996 the first International Twin OI Conference took place in Woudschoten, The Netherlands. These were the 6th International Scientific Conference on OI and the Life and OI Conference for OI People. The latter was organised by the OIFE in close coöperation with the VOI, the Duch OI society.

Growing activities on a European scale in Brussels in the frame of the Helios II programme led to the establishment of the “European Disability Forum” (EDF) in 1997- OIFE was one of its founding members.

In 2001 Rob van Welzenis retired as OIFE’s president. He was succeeded by Ute Wallentin, who had been a member of OIFE’s EC since its foundation.

Per January 2009 OIFE has 13 European full members, 8 associate, 2 supporting, and one honorary member.

Executive Committee (EC)


Ute Wallentin President	Taco van Welzenis 1st vice-president	Filip de Gruytere 2nd vice-president	Vacancy Treasurer




Volunteers assisting the EC

Steffi Wagner Secretary	Anna Rossi Youth activities coordinator	Dr. J. Oliver Semler Medical website Editor	Rob van Welzenis Webmaster