GAUCHER DISEASE


GAUCHERS NEWS OCTOBER 2002


New Drug Gets Positive Opinion for Approval in EU
Zavesca (formerly known as Vevesca or OGT 918) has received a positive opinion recommending approval in the European Union for use in patients with mild to moderate Type 1 Gauchers disease with the proviso that it is used by patients for whom enzyme replacement therapy is unsuitable and that follow-up safety data is obtained on all patients. (October 2002).

Quality of Life in Patients with Gaucher Disease on Long Term Enzyme Replacement Therapy in Holland
Ria Guijt has suffered from Gauchers disease since she was a child. She is a qualified psychologist and is currently Vice-President of the Dutch Gaucher Association. Together with Mineke Ek, Research Nurse at the Amsterdam Medical Center, Ria has researched the quality of life of Dutch patients since they started enzyme replacement therapy. (October 2002).

Outcome in Pregnancy
A study to evaluate how women with Gauchers disease fared with pregnancy and child birth, both on and off enzyme replacement therapy, has been made by Dr Debby Elstein, Research Director at the Shaare Zedek Medical Centre in Israel together with colleagues. (October 2002).

Non-Cemented Hip Replacements in Patients with Gauchers Disease
The successful outcome of non-cemented hip replacements in patients with Gaucher disease was presented by Dr Menachem Itzchaki, Consultant Orthopaedic Surgeon to the Gaucher Clinic at the Shaare Zedek Medical Center in Israel, at the EWGGD meeting on 1 May 2002. (October 2002).

Ria's Story: 'My Brother was Diagnosed aged Three Years Old. It Turned Out My Sister and I Had It Too.'
Ria Guijt was born in Holland in 1956 and nine years later was diagnosed with Gaucher disease. On several occasions Ria has spoken publicly about the quality of life of Dutch sufferers (see above) but this is her own story. (October 2002).

5th European Working Group on Gaucher Disease Workshop
The European Working Group on Gaucher Disease (EWGGD) held its 5th Workshop in Prague in Czech Republic on 1-4 May 2002. (October 2002).

Questions and Answers about the UK National Gaucher's Centres
The four centres look after over 270 patients with Gaucher disease. How they work and how they relate to your own local doctor. (October 2002).

The Unpaid Debt of Science to Medicine
Prof Timothy Cox used the location of the EWGGD meeting in the Czech Republic to highlight his opening lecture on European scientific thought that had developed in Europe since the years of the Enlightenment in the 17th - 18th Century when the basic conviction was that through reason mankind could find knowledge and happiness. (October 2002).

News from Around Europe
Delegates from patient associations in 15 countries attended the European Gaucher Alliance meeting which followed the European Working Group on Gaucher Disease (EWGGD) scientific meeting in Prague in May 2002. (October 2002).


Current and previous issues of Gauchers News and the alphabetical index


Associations Around The World
A list of addresses, phone numbers of Associations and contacts operating in 39 countries. Latest addition or change: March 2004.

E Mail Discussion List

Conferences

Physicians with experience of Gaucher disease

European Gaucher Alliance
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Gaucher's Association Aims and Disclaimer

Other Relevant Web Sites

Contenido en español (Spanish translations).


DISCLAIMER
Please note that anyone who suffers from Gaucher's Disease or thinks they suffer from it should consult a physician who is experienced with dealing with the condition. The information included on these pages is intended to be useful to patients and physicians but it is no substitute for skilled medical advice.

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