Gauchers Disease: Good Housekeeping
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. (October 2003).
Bone Research Starts
A national survey and intervention study of bone complications in Gauchers Disease starts this autumn funded by the Gauchers Association. The three year study will involve UK patients in all the four UK national Gaucher centres. (October 2003).
Kate Lorig's Story: From Gauchers Disease to
developing Self Management Courses Worldwide
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. (October 2003).
Extending the Use of Cerezyme for Type
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. (October 2003).
Zavesca Trial for Type 3 Gauchers Disease
Starts in the UK
This July saw the start of a screening process of children with Type 3 Gauchers disease at Great Ormond Street Hospital, London, England to decide if they were suitable to enter the Zavesca (OGT 918) trial. (October 2003).
US Approval of Zavesca
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. (October 2003).
Weizmann Institute Scientists Solve the 3-D
Structure of the Enzym involved in Gaucher Diseasee
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. (October 2003).
Gaucher Alliance Newsletter
Stories from Romania, Italy and Russia from the latest European Gaucher Alliance Newsletter. (October 2003).
Current and previous issues of Gauchers News and the alphabetical index
Associations Around The World
A list of addresses, phone numbers of Associations and contacts operating in 39 countries. Latest addition or change: October 2003.
E Mail Discussion List
Physicians with experience of Gaucher disease
The aims of the EGA are currently available in English, French, Spanish, Italian, German, Dutch, Swedish, Russian, Polish, Hungarian, Hebrew, Czech, Bulgarian, Romanian and Finnish translations.
Gaucher's Association Aims and Disclaimer
Other Relevant Web Sites
Contenido en español (Spanish translations).
Please note that anyone who suffers from Gaucher's Disease or thinks they suffer from it should consult a physician who is experienced with dealing with the condition. The information included on these pages is intended to be useful to patients and physicians but it is no substitute for skilled medical advice.
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