The first meeting of the Gauchers Association took place on 4 August 1991 but it was a talk organised by the Helen Manuel Foundation a couple of months earlier that changed the lives of many people with Gaucher disease. Susan Lewis looks back on the last decade with gladness, gratitude, some sadness and hope for an even better
future.
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Dr Rene Heitner has been treating seven Gaucher sufferers in South Africa (5 children and 2 adults) with Ceredase. He has sent the Gauchers Association this report:
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The first clinical study in the USA with Vevesca for Type 1 Gaucher disease is to begin shortly at the New York University School of Medicine. Results of the first European multi-centre clinical study were published in the Lancet in April 2000 and the results of two further trials, one with patients taking a lower dose and one taking combination therapy with Cerezyme are due to be published shortly. Susan Lewis reports:
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Dawn was 10 years old when she was diagnosed with having Gaucher disease. After nearly 10 years of enzyme replacement therapy, she is planning to become a solicitor and is in her final year at university studying law. This is her story:
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Eight million people live in the East European ex-communist country of Bulgaria. Last year the National Gauchers Association of Bulgaria was founded to help five children and three adults already diagnosed with Gaucher disease obtain information and treatment. In April 2001, 45 well-known local artists donated 110 paintings for a charity
exhibition to raise money for the Association and the following day a meeting covering the medical and psychological aspects of the disease was held for families and their medical advisers. Susan Lewis attended the meetings in the capital city of Sofia along with Fern Torquati, President of the Italian Gaucher Association and Prof Ari Zimran who heads the Gaucher Clinic in Jerusalem, Israel. Susan reports here:
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Vladimir Tomov is Chairman of the National Gaucher Association of Bulgaria. His 14 year old daughter Radoslava, has Gaucher disease. Radoslava is very pretty but her pale complexion and enlarged stomach, which she carefully hides behind loose clothing, gives testimony to her need for enzyme replacement therapy.
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Prof Ari Zimran, who heads the Gaucher Clinic at the Shaare Zedek Medical Centre in Jerusalem addressed the audience of doctors, families with Gaucher disease and others during his visit to Bulgaria. This is a summary of his talk:
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The Gaucher Centres, designated by the UK Department of Health and receiving special government funding, have been running for over a year. There are now two adult centres and two for children: listed opposite. Prof Timothy Cox, who heads the Gaucher Centre at Addenbrooke’s Hospital Cambridge, spoke in January 1998 to doctors and directors of health from local health authorities outlining the aim and benefits of having such specialised centres:
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Parents of disabled children are to benefit from new measures introduced by the UK Department of Trade and Industry to come into effect later this year.
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A paper on The Management of Neuronopathic Gaucher Disease was published in the Journal of Inherited Metabolic Disease in June 2001. The consensus was developed by the Neuronopathic Gaucher Disease Task Force, a group of doctors from the European Working Group on Gaucher Disease who specialise in this form of the disease. The following is an edited version of the article prepared by Dr Ashok Vellodi and Tanya Collin-Histed.
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