News from Around Europe


European Gaucher Alliance
Gauchers News Contents


Delegates from patient associations in 15 countries attended the European Gaucher Alliance meeting which followed the European Working Group on Gaucher Disease (EWGGD) scientific meeting in Prague in May 2002, writes Susan Lewis.


As always the patients' representatives from Europe gained a great deal from hearing the medical experts discuss their findings at the EWGGD meeting in Prague last May - even if some of the scientific data and information still went above our heads.

In addition the patients' representatives were able to present their achievements and future aims to the professional audience showing how support groups can help their members. Also covered was the plight of families living in parts of Europe where their health service is not as well established as those in the West.

European Gaucher Alliance (EGA)

Patient representatives came from Bulgaria, Czech Republic, Denmark, France, Germany, Greece, Israel, Italy, Netherlands, Poland, Romania, Russia, Ukraine, UK and Yugoslavia.

The EGA meetings which directly followed the EWGGD meeting lasted for two days when the patient representatives were able to discuss in great detail what is happening in each country. Particular emphasis was placed on hearing from Bulgaria, Romania, Russia, Ukraine and Yugoslavia where many patients are unable to obtain funding for enzyme replacement therapy.

A full discussion with represen-tatives from Genzyme Therapeutics enabled the EGA to discuss further possibilities in helping families in Eastern Europe.

Oxford GlycoSciences provided a grant to enable delegates to travel to the meetings in Prague and covered some other expenses incurred.

The European Working Group on Gaucher Disease also provided a grant to enable free registration and some hotel accommodation.

10 Year Anniversary Conferences in Italy and Germany

Italy and Germany celebrated their 10 year anniversaries in May 2002 with two day Conferences and celebratory dinners. Both were well attended and the audiences heard from their own experts how the care of patients had evolved over the past ten years.


European Gaucher Alliance
Gauchers News Contents

Source: Gauchers News October 2002.
© Copyright Gauchers Association 2002