Genetic
Diseases E Mail Discussion ListYou exchange E mails with about 200 other sufferers (including a few physicians) interested in Gaucher Disease. The list covers other genetic conditions but the majority of members are Gaucher patients.
Genetic
Diseases E Mail Discussion List
You exchange E mails with about 200
other sufferers (including a few physicians) interested in Gaucher Disease. The
list covers other genetic conditions but the majority of members are Gaucher
patients.
Physicians with experience of Gaucher disease
Associations Around The World
A list of addresses
and phone numbers of Associations worldwide.
Comprehensive Book on Gaucher Disease
MedLine
PubMed Database of Medical Articles
You can search this extensive
database without charge or the need to register at the National Library of
Medicine of the USA. A summary of many articles is available on the database.
After clicking the link above, make sure that the box Search shows
PubMed and type in Gaucher Disease in the box which has the word
for in front of it. Then click Go.
National Institute of Health, extensive references for Gaucher
Disease Type 1 in academic periodicals
Although this looks like a
comprehensive list, some important articles appear to be missing. The updating
is done every few months so it is not as up to date as Medline (above).
Federal and Private Roles in the Development and Provision of
Alglucerase Therapy for Gaucher Disease
A report by the US Government
Office of Technology Assessment (OTA) published in October 1992. This is held
as an acrobat file and is 41 pages long (including 10 pages of references).
European Gaucher Alliance With links to the aims in 18 langauages.
Children's Gaucher Research Fund (Type 2 and 3)
Addenbrooke's Hospital, UK Gaucher Service
Genetic Interest Group (GIG), UK
UK Self Help and Patient Groups Web Links
National Association of Rare Disorders, USA
International
Gaucher Registry
Mainly of interest to physicians treating patients
with Gaucher Disease. The Registry is financed and run by Genzyme
Corporation.
Information in Spanish, French, Italian, Swedish, Dutch, German,
, Russian
and Hebrew:
¡ Pide un
deseo! La enfermedad de Gaucher
Last updated 2 October 2004.
© Copyright Gauchers
Association Ltd 2003
