Celebration to Share the Successes of the Last Ten Years


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The Gauchers Association celebrated its 10th Anniversary on 10 November 2001 with over 115 guests at a special Dinner held at the Wembley Plaza Hotel on the outskirts of London the day before the Association's 5th Conference.


People with Gauchers disease, their families, doctors and their staff, researchers, pharmaceutical representatives and fund-raisers attended the 10th Anniversary Dinner where Jeremy Manuel, Chairman of the Association, said: 'Tonight is a celebration before our Conference and the European Workshop. It is an opportunity to share the successes of our last ten years in the company of friends.

'In August 1991 eight people met in my dining room to discuss a common concern. It was as clear then as it remains now that collectively we have a role to play in helping those with Gauchers disease, both in the UK and overseas.

'We are bound together by the desire to share information, for patients to talk to each other, for parents to exchange their stories and to strive to obtain the treatment that can help sufferers.

'Ten years ago we never imagined that we would now be living in a country where all patients in the UK who need it receive enzyme replacement therapy and that the Government would designate four centres of excellence to treat Gauchers patients. We never thought that we would be in contact with over 70% of the patients in the UK and we would never have believed the relationships that have developed between ourselves, doctors both in this country and overseas, researchers, pharmaceutical companies and our sister patients' organisations throughout the world.

Fourteen countries are represented here tonight. Including the UK, they are USA, France, Germany, Italy, the Netherlands, Israel, Czech Republic, Poland, Bulgaria, Romania, Russia, Ukraine and Finland. In absolute terms we are few in number but we are a close family committed to helping each other serve patients with Gauchers disease and trying to find the best for them.

'In the UK patients are profoundly grateful to their doctors and specialist teams at the four Centres for their care and this is an excellent example of how the National Health Service should be run. This quality of care is also shown by doctors far beyond these Isles and I would like to single out Prof Ari Zimran from Israel, who will be speaking at our Conference, and his colleague Dr Debby Elstein for their extraordinary work and research into Gauchers disease. I also thank Dr Rene Heitner who has travelled from South Africa to be here. Dr Heitner is battling against many odds to help his patients with limited resources but with great effect.'

Jeremy then presented the six doctors with a glass Award of Appreciation and thanked those attending the Dinner for their hard work and contribution to the lives of those with Gauchers disease. 'However I ask everyone to remember those who have not survived this disease. This should make us even more determined to find ways to help all those who suffer from Gauchers disease.'


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Source: Gauchers News March 2002.
© Copyright Gauchers Association 2002