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
3
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).
European
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.
Physicians with experience of Gaucher
disease
European Gaucher
Alliance
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
Contenido en español (Spanish translations).
DISCLAIMER
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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