Tenth Anniversary of the Gauchers Association
1991-2001
Susan Lewis looks back on the last decade with gladness,
gratitude, some sadness and hope for an even better future. (September 2001).
Low Dose Treatment in South Africa
Dr
Rene Heitner has been treating seven Gaucher sufferers in South Africa (5
children and 2 adults) with Ceredase. (September
2001).
Vevesca (OGT 918): US Study To Start at NYU
Gaucher Clinic
The first clinical study in the USA with Vevesca for Type
1 Gauchers disease is to begin shortly at the New York University School of
Medicine. (September 2001).
Dawn's Story: 'Although Gaucher disease is part of
me, I will not let it rule who I am'
Dawn was 10 years old when she was
diagnosed with having Gaucher disease. After nearly 10 years of enzyme
replace-ment therapy, she is planning to become a solicitor and is in her final
year at university studying law. (September 2001).
Gaucher Disease in Bulgaria
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. (September
2001).
Vladimir's Story: We have had to fight many
battles to get treatment
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. (September
2001).
Prof Ari Zimran Talks About Gaucher Disease in
Sofia
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. (September 2001).
News from the Gauchers Centres
(September 2001).
Parental Leave and Family Fund
Trust
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. (September 2001).
Management of Neuronopathic Gaucher disease: A
European Consensus
The publication of the paper on Management of
neuronopathic Gaucher disease: A European Consensus in the Journal of
Metabolic Diseases in July 2001 is the culmination of much work by Dr Ashok
Vellodi, Tanya Collin-Histed and European colleagues specialising in the care
of children suffering from neuronopathic Gaucher disease. (September 2001).
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