GAUCHERS NEWS MARCH 2001


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).


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