There are 200 different pages at this Web Site for the use of patients with Gaucher's Disease and their doctors.
Most patients have Type 1 disease. But if you are looking for
information on Type 2 or Type 3 we now have a special home page for
Neuronopathic Gaucher Disease. However Type 3
patients should also read information on the main pages which is equally
applicable to them.
If you want to let us have your comments and
suggestions
send
us a message.
Opinions expressed here are not necessarily those of
the Gauchers Association.
All the pages on this site are also available in Spanish. Some pages have also been translated into German and Italian and this is shown in the contents below. We are also starting to translate the site into Russian. This site looks best if viewed with Internet Explorer 5 or 6.
If you need an understandable but comprehensive introduction to the subject read Living with Gaucher Disease first. This is also available in Italian and Bulgarian as well as English, Spanish and Russian.
If you can't find what you want, try using the search facility.
European Working Group on Gaucher Disease - Sixth
Workshop in Barcelona
Two hundred delegates including physicians and
other medical staff, scientists, pharma-ceutical companies and patient
representatives from 17 European Gaucher Associations met at the sixth workshop
of the European Working Group on Gaucher Disease. (May
2005).
Susan Lewis Retires as Executive Director.
Tanya Collin-Histed to take over
Susan Lewis retires as Executive
Director of the Gauchers Association on her 60th birthday. Tanya Collin-Histed,
who is already a Trustee and Executive member, will take over her post. Tanya
is well known for her work for children with neuronopathic Gaucher diseasel.
She writes a special letter to all her
friends and colleagues. (May 2005).
The Politics of Gaucher Disease in
Europe
Prof Timothy Cox of the Department of Medicine, University of
Cambridge at Addenbrooke's Hospital spoke at the EWGGD Conference on the
Politics of Gaucher disease in Europe. (May 2005).
Enzyme Replacement Therapy and Home
Infusions
Several speakers presented information about the continuing
benefits of enzyme replacement therapy at the EWGGD meeting including reports
from Belgium, the USA, Italy, Greece, Germany, Holland and Israel. In addition
the practice of patients having their infusions of enzyme replacement therapy
at home, was discussed by patients and doctors. (May
2005).
Zavesca (miglustat) Results
Zavesca was
discussed by five speakers at the European Working Group on Gaucher Disease
meeting in Barcelona on 14-16 October 2004. Zavesca was licensed in November
2002 for the use of patients with mild to moderate Type 1 Gaucher disease for
whom enzyme replacement therapy is unsuitable. (May
2005).
Genzyme tries to stop trial of new competitive
therapy
A clinical trial to assess the safety of a new enzyme
replacement therapy for Gaucher disease produced by Transkaryotic Therapies Inc
commenced in Israel in April 2004. In January 2005, Genzyme filed legal
proceedings to stop the trial. (May 2005).
A new orally administered replacement therapy to
restore enzyme activity
Dr Edward Ginns, Director of Research in
Pediatric Neurology at the University of Massachusetts Medical School in the
USA is working on a technique to be taken by mouth that can deliver DNA
directly to the macrophage cells of patients with Gaucher disease and other
lysosomal storage disorders. (May 2005).
Central funding for therapy as well as for
Gaucher centres in UK
The Dept of Health announced on 28 October 2004
that for two years, from April 2005 to March 2007, Cerezyme and Zavesca
prescribed for patients with Gauchers disease will be centrally funded by the
Dept of Health under the auspices of the National Specialised Commissioning
Advisory Group (NSCAG). Previously the cost of the two therapies was paid for
by patients' local health authority or Primary Care Trust. (May
2005).
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: May 2005.
Physicians with experience of Gaucher
disease
European Gaucher
Alliance
The aims of the EGA are currently available in
English, French, Spanish, Italian, German, Dutch, Danish, Swedish, Norwegian,
Russian, Polish, Hungarian, Romanian, Hebrew, Czech, Bulgarian, Serbian,
Slovenian, and Finnish translations.
Gaucher's Association Aims and Disclaimer
Contenido en español (Spanish translations).
If this information has helped you, why not help us by sending a donation to enable us to continue our work:
To make a donation to the Gauchers Association, please contact us and we will tell you where to send your cheque.
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.
Gauchers Association Web pages are designed and maintained by Wisebuy Internet.
This page last updated 6 June 2005
©
All pages copyright Gauchers Association Ltd 1996-2005
Walmart
New counter started 1
November 2003 which counts each visitor, not each hit.
83,726 hits from August 1998 to August 2002