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Representatives from 10 European patient organisations met in Lemnos in Greece at the end of May 1999 during the 3rd Scientific Meeting of the European Working Group on Gaucher Disease. They renewed their friendship, met new members and consolidated their links under the umbrella organisation, European Gaucher Alliance, which was founded in Trieste at the first EWGGD in 1994 and confirmed at the second meeting in Maastricht in 1997. Susan Lewis reports:
Many hours were spent by the European patient representatives discussing how best to further the aims of the European Gaucher Alliance. They discovered a need for additional mutual support: both between the well established associations and the newly formed ones. One aim is to help the emerging patient associations in Europe and be a resource for countries in the rest of the world. It became apparent during the three day meeting that several of the Eastern European countries felt a sense of desperation in their effort to obtain treatment, including enzyme replacement therapy, for their members who have Gaucher's disease. The Alliance agreed to co-operate even more closely in solving problems for their members.
Present at the meeting were representatives from Bulgaria, Czech Republic, France, Germany, Greece, Holland, Israel, Italy, Romania and UK.
Aims of the European Gaucher
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Source: Gaucher's News, July 1999.
© Copyright Gaucher's Association 1999.