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Over one hundred doctors and scientists from 20 European countries spent two days in Maastricht, Southern Holland, speaking and hearing about the latest developments in the field of Gauchers disease. This took place within the Second Workshop of the European Working Group on Gauchers Disease (EWGGD) which was held on 1-3 May 1997. Jeremy Manuel reports:
The two day meeting was intensive and beneficial on two levels. Firstly the scientific content showed the immense interest that centres all over Europe are taking in Gauchers disease.
The UK was well represented with talks given by Dr Alan Cooper of the Willink Institute, Manchester; Professor Timothy Cox and Dr Paul Schofield of Addenbrooke's Hospital, Cambridge; Dr Pram Mistry of the Royal Free Hospital, London; Dr Ashok Vellodi of Great Ormond Street Hospital for Children, London; Dr Terry Butters of the Glycobiology Institute, University of Oxford and Dr Elizabeth Young of the Institute of Child Health, London.
Secondly the opportunity for 20 different European countries to describe how they were dealing with the disease was instructive and im-portant. Contributions from countries like the Czech Republic, Finland and Greece describing small numbers of patients gave a wider perspective.
Some of the speakers, including a Russian doctor, spoke about the difficulties in giving treatment to their patients due to lack of facilities and funding.
European Patient Groups
Eight European patient groups were represented: UK, Holland, Italy, France, Germany, Sweden, Israel and Belgium. They held a separate meeting to discuss matters of mutual interest which was encouraging and helpful.
The groups confirmed their allegiance to the European Alliance as an umbrella organisation but agreed to continue to work as before on an informal manner. They discussed international aspects and Holland, Italy and the UK said they had been approached by other countries for help. It was felt that this would continue due to wider use of fax and Internet communication.
The gathering together of brilliant minds to help sufferers of Gauchers disease was awesome and humbling.
I would like to take the opportunity on this page to congratulate and encourage the scientists and doctors participating and to ask them and all the doctors and scientists around the world to continue helping those suffering from Gauchers disease.
European Patients Reviewed
Given below is an analysis of the number of people with Gauchers disease described by the European doctors in their different countries. These numbers may not be complete and not all the patients are undergoing enzyme replacement therapy: the reasons varying from mildness of symptoms to lack of funding.
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Source: Gauchers News November 1997
© Copyright Gauchers Association 1997