Management of Neuronopathic Gaucher Disease: A European Consensus


Neuronopathic Gaucher's News Contents
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In the July 1999 Gaucher's News Tanya Collin-Histed wrote about a proposal for a European Consensus on how to treat patients suffering from Type 3 Gaucher disease.


Tanya first proposed a Consensus on how to treat patients with Type 3 Gaucher disease at the Third Workshop of the European Working Group on Gaucher Disease (EWGGD) held in May 1999 at Lemnos, Greece.

Following this, the EWGGD appointed a Task Force to propose recommendations for the management of neuronopathic Gaucher disease. The Task Force consisted of doctors from around Europe and Tanya was appointed a representative of the patient associations.

They met in London on Saturday 28 August 1999 to analyse both published and unpublished data on neurono-pathic Gaucher disease patients.

Based on this analysis, a draft proposal for the Management of Neuronopathic Gaucher Disease has been developed.

Recommendations

The recommendations of the Task Force were discussed under the following headings:

The draft proposal has been circulated to the members of the Task Force for feed back and comments and the final draft will be sent to the EWGGD for their approval.

Once the EWGGD has approved the consensus, then the document will be widely distributed to doctors and patient groups throughout Europe for information.

In the long term a consensus should be developed for the management of neuronopathic Gaucher disease in agreement with doctors and health professionals in the USA, Canada, the Far East and many other places where patients with neuronopathic Gauchers disease are being cared for.

Tanya says: 'I would like to take this opportunity to thank the following doctors and scientists who gave up their own time to take part in the consensus: Ashok Vellodi (UK), Anders Erikson (Sweden), Anna Tylki-Szymanska (Poland), Arndt Rolfs (Germany) and Hans Aerts (The Netherlands).

'My thanks also goes to Robert Marlow from the USA who made transcripts of the entire proceedings and enabled the Task Force to produce the final draft consensus. Their dedication and commitment to Gauchers disease is truly commendable.'


Neuronopathic Gaucher's News Contents
Type 3 Consensus Task Force (July 1993)
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Source: Gaucher's News February 2000. © Copyright Gauchers Association 2000