In this issue of the Gauchers News you will find a report on Zavesca receiving a positive opinion, a study to evalulate how women with Gaucher Disease fared with pregnancy and child birth and Ria's story

Zavesca (formerly known as Vevesca or OGT 918) has received a positive opinion recommending approval in the European Union for use in patients with mild to moderate Type 1 Gauchers disease with the proviso that it is used by patients for whom enzyme replacement therapy is unsuitable and that follow-up safety data is obtained on all
patients.
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Ria Guijt has suffered from Gauchers disease since she was a child. She is a qualified psychologist and is currently Vice-President of the Dutch Gaucher Association. Together with Mineke Ek, Research Nurse at the Amsterdam Medical Center, Ria has researched the quality of life of Dutch patients since they started enzyme replacement therapy. Ria related the results at the meeting of the European Working Group on Gaucher Disease in Prague on 2 May 2002.
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A study to evaluate how women with Gauchers disease fared with pregnancy and childbirth, both on and off enzyme
replacement therapy, has been made by Dr Debby Elstein, Research Director at the Shaare Zedek Medical Centre in
Israel together with colleagues.
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The successful outcome of non-cemented hip replacements in patients with Gaucher disease was presented by Dr Menachem Itzchaki, Consultant Orthopaedic Surgeon to the Gaucher Clinic at the Shaare Zedek Medical Center in Israel, at the EWGGD meeting on 1 May 2002. These findings are comparable to Dr Itzchaki's experience in cemented hip replacements for Gaucher disease and to the experience of hip replacements in the general population.
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Ria Guijt was born in Holland in 1956 and nine years later was diagnosed with Gaucher disease. On several occasions Ria has spoken publicly about the quality of life of Dutch sufferers (see pposite) but this is her own story:
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The European Working Group on Gaucher Disease (EWGGD) held its 5th Workshop in Prague in Czech Republic on 1-4 May 2002. Susan Lewis reports:
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Questions and answers about the four national Gaucher Centresm which look after over 270 patients with Gaucher disease.
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Prof Timothy Cox used the location of the EWGGD meeting in the Czech Republic to highlight his opening lecture (summarised below) on European scientific thought that had developed in Europe since the years of the Enlightenment in the 17th - 18th Century when the basic conviction was that through reason mankind could find knowledge and happiness.
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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.
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