GAUCHER DISEASE


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.


GAUCHERS NEWS MAY 2005


Gauchers News May 2005

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.

E Mail Discussion List

Conferences

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

Other Relevant Web Sites

Contenido en español (Spanish translations).

Donations

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.


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This page last updated 6 June 2005
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