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.
Physicians with experience of Gaucher
disease
European Gaucher
Alliance
The aims of the EGA are currently available in
English, French, Spanish, Italian, German, Dutch, Swedish, Russian, Polish,
Hungarian, Hebrew, Czech, Bulgarian, Romanian and Finnish
translations.
Gaucher's Association Aims and Disclaimer
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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