In this issue of the Gauchers News find out about the issues discussed at the sixth workshop of the European Working Group on Gaucher Disease including an interesting insight into the politics of Gaucher disease in Europe and a review of enzyme replacement therapy and home treatment.

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 in Barcelona on 14-16 October 2004. Susan Lewis reports:
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Susan Lewis retires as Executive Director of the Gauchers Association on her 60th birthday. Her retirement letter is given on page nine. 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 disease.
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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
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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.
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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.
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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.
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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.
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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.
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