In this issue of the Gauchers News you will find a report on the open meeting about Gauchers Disease, this autumn brings the start of a National Bone Study and other clinical trials and read the story of a Professor of Medicine and Director of Patient Education Research Centre at Stanford University in California who has Gauchers Disease.

An open meeting about Gauchers disease, how it is inherited, what the symptoms are and how patients can be treated took place at the Royal Free Hospital, London on 27 March 2003.  Dr Atul Mehta, Head of the Gauchers Centre and Consultant Haematologist gave a comprehensive talk about the condition.
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Officially entitled Osseus (bone) Complications in Gauchers Disease: a national survey and intervention study starts this autumn funded by the Gauchers Association. Jane Tindall has been employed as the Senior Research Nurse to work on the three year study which will involve UK patients in all the four national Gauchers Centres.
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Dr Kate Lorig, is a Professor of Medicine and Director of the Patient Education Research Center at Stanford University in California where she has developed a successful self management programme which has helped thousands of people suffering from long term conditions in may parts of the world. She also has Gauchers disease.
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Genzyme Therapeutics announced in June 2003 that the European Committee for Proprietary Medicinal Products (CPMP) has issued a positive opinion on expanding the indication for Cerezyme to include Type 3 Gauchers disease.  Genzyme hopes to receive formal approval of the label expansion by the European Commission later this year.
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This July saw the start of a screening process of children with Type 3 Gauchers disease at Great Ormond Street Hospital to decide if they were suitable to enter the Zavesca (OGT 918) trial, writes Tanya Collin-Histed.
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The US Food and Drug Administration has approved Zavesca for the treatment of adult patients with mild to moderate Type 1 Gauchers disease for whom enzyme replacement therapy is not a therapeutic option.
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A team of scientists at the Weizmann Institute in Israel has solved the three-dimensional structure of the enzyme, glucocerebrosidase, which is deficient in sufferers of Gaucher disease. The scientists claim that the study, published recently in a journal of the European Molecular Biology Organisation (EMBO Reports), may lead to the design of new therapies for treating the disease.
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