Current Issue of Gauchers
News
Alphabetical index and other previous
issues
OGT 918 Re-Named Vevesca
OGT 918, which
is currently on trial for treatment of Gaucher disease, was discussed at the
European Working Group for Gaucher Disease meeting in Jerusalem on 6-9
September 2000 and at the National Gaucher Foundation Conference in Arlington,
Virginia on 12-13 November 2000. (March 2001).
Ozone Therapy
Prof Ari Zimran spoke about
the research he has carried out into ozone therapy to aid pain control in
people with Gaucher disease. (March 2001).
National Gaucher Foundation Conference
September 2000
About 180 individuals with Gauchers disease and their
families attended a two day Conference in Arlington, Virginia, USA on 12-13
November 2000 to hear experts from the USA and Israel talk about the latest
information on Gaucher disease. (March 2001).
Children with Gaucher Disease
Dr Paige
Kaplan, who heads the Gaucher Center at the Children's Hospital of
Philadelphia, spoke about the symptoms and problems of children with Gaucher
Disease at the National Gaucher Foundation Conference on 12 November 2000.
(March 2001).
Healthcare at Home User Survey
In July
2000 Healthcare at Home carried out a survey of UK patients with Gaucher
disease who receive Cerezyme through their delivery and nursing service.
Seventy eight responded stating where they were infused and whether they were
satisfied with the delivery and, in some cases, the nursing service.
(March 2001).
Wojtek's story: I am now similar to my
friends
Wojtek Oswiencinski has Gaucher disease, is 22 years old, a
student and lives in Poland. His father, Pawel, is Chairman of the Polish
Gauchers Association and Wojtek represents Poland at the European Gaucher
Alliance. (March 2001).
European Gaucher Alliance Meeting, Jerusalem
2000
Eleven countries were represented by their patient associations at
the European Gaucher Alliance (EGA) meeting which took place in Jerusalem on
5-6 September 2000. (March 2001).
Israeli Gaucher Association Meeting 2000
The Israeli Gaucher Association Meeting was held on 5 September 2000 in
Jerusalem to which delegates from the European Gaucher Alliance meeting were
invited. Dr Gregory Grabowski spoke on 'Summarising 10 years of Enzyme
Replacement Therapy' and Prof Ari Zimran on 'New Therapeutic Approaches to
Gaucher Disease'. (March 2001).
New Enzyme Treatments for Other Diseases
Patient associations for six different diseases were represented at two days of
talks about the development of new enzyme replacement therapies and medical
advances during a Congress for the Society for the Study of Inborn Errors of
Metabolism held in Cambridge on 16-17 September. (March
2001).
Current Issue of Gauchers News
Previous
issues of Gauchers News and the alphabetical index
This page last updated 12 December 2001.
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