3rd European Working Group on Gaucher Disease


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One hundred and six delegates from 21 countries attended a three day Scientific Meeting from 20-23 May 1999 in Lemnos in Greece. The scientific programme was divided into several sessions with expert scientists and doctors from around the world covering different aspects of Gaucher's disease including its symptoms, assessment, management and therapy. Susan Lewis and Tanya Collin-Histed represented the UK Gaucher's Association.


The quality of the presentations, the extent of the intensive research that is being performed and the enthusiasm of the scientists, doctors and biochemists was impressive and inspiring,' writes Susan Lewis.

It is impossible for a layman to adequately understand, describe or assess the content of the diverse subjects covered but there can be no doubt that brilliant minds, hard work and dedication have culminated in helping to significantly improve the future of those with Gaucher's disease.

'Having attended the first two Workshops in Trieste 1994 and then in Maastricht 1997, the content of the 3rd Scientific Meeting has been built on at Lemnos and has been expanded.'

The 21 countries represented were: Austria, Belgium, Bulgaria, Czech Republic, France, Germany, Greece, Israel, Italy, Netherlands, Poland, Portugal, Romania, Russia, Slovenia, Slovakia, South Africa, Spain, Turkey, UK and USA.

Sessions

The sessions were divided under the following headings:

Clinical Manifestations in Gaucher's Disease included talks on severe liver disease by Dr Robin Lachmann (Addenbrookeµs Hospital); growth in children by Dr Aya Abrahamov (Shaare Zedek, Israel); and pulmonary hypertension (lung disease) by Dr Pram Mistry (Mt Sinai Hospital, USA)

Molecular Basis, Diagnosis, Geno-types were covered by delegates from 7 countries including Marie-Teresa Moran (Addenbrooke's Hospital).

Enzyme Replacement Therapy was discussed by five speakers including Dr Ashok Vellodi (Great Ormond Street Hospital) who discussed the importance of high dose treatment for children with Type 3 disease.

Alternative Approaches to Therapy covered a talk on substrate deprivation therapy including OGT 918 given by Dr Fran Platt (University of Oxford); and Dr John Barranger (University of Pennsylvania, USA) spoke about on-going research into gene therapy, both on an existing trial injecting the gene into the bloodstream of a patient and on a new method of injecting myo-blasts (cells which develop into muscle tissue) with the gene. This work is still being carried out in the laboratory.

Monitoring of Therapy included different ways to assess the signs and symptoms of the disease including MRI, radiological, biochemical and clinical parameters.

Congratulations

During the final session of the Scientific Meeting, Susan Lewis thanked the organisers, especially Dr Helen Michelakakis, for inviting the the patient organisations.


Source: Gaucher's News July 1999

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© Copyright Gaucher's Association 1999