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Resources On The Internet
…alphabetical order
Batten Disease Support & Research Association
www.bdsra.org
Brave Kids
http://www.bravekids.org/
Web resource center for kids with chronic or life threatening illnesses.
Center Watch, Clinical Trials Listing Service
www.centerwatch.com
Children's Gaucher Research Fund
http://www.childrensgaucher.org
The Children's Gaucher Research Fund is a non-profit organization, that raises funds to coordinate and support research aimed at finding a cure for Type 2 and Type 3 Gaucher disease. Compassionate Friends
http://www.compassionatefriends.org/
The mission of The Compassionate Friends is to assist families in the positive resolution of grief following the death of a child and to provide information to help others be supportive.
Children's Hospice International
www.chionline.org
Comprehensive Gaucher Treatment Center - Los Angelas - California
http://gaucherwest.com
Gaucher Association, UK
http://www.gaucher.org.uk
The Gauchers Association, UK, was formed in 1991 to meet the needs of those suffering from Gaucher disease. Its members are mainly in the UK and Ireland.
Genzyme Corporation, Cambridge, Massachusetts
http://www.genzyme.com
Genzyme Corporation home page. Genzyme is the provider of Cerezyme, a recombinant form of the enzyme glucocerbrosidase - Enzyme Replacement Therapy.
Genzyme Corporation, Cambridge, Massachusetts
http://www.cerezyme.com
Information pertaining to the drug Cerezyme - Enzyme Replacement Therapy.
Hospice Foundation of America
www.hospicefoundation.org
The International Society of Mannosidosis &Relatef Diseases
www.mannosidosis.org
Lysosomal Storage disease Network
www.lsdn.com
Massachusetts General Hospital Gaucher Treatment Program
http://gaucher.mgh.harvard.edu
Mt. Sinai School of Medicine, NY, Comprehensive Gaucher Disease Treatment Center
http://www.mssm.edu/gaucher/index.shtml
National Gaucher Foundation
http://www.gaucherdisease.org
The National Gaucher Foundation was founded in 1984 to meet the needs of those suffering from Gaucher disease. Its members are mainly in the United States.
National Institutes of Health
http://www.nih.gov
National Institutes of Health home page. Information may be obtained by selecting "Search" and requesting information on "Gaucher."
National Institute of Health
http://text.nlm.nih.gov/nih/ta/www/16.html
Gaucher Disease: Current Issues in Diagnosis and Treatment. National Institutes of Health Technology Assessment Conference Statement dated February 27-March 1, 1995
National MPS Society, Inc.
www.mpssociety.org
National Niemann-Pick Disease Foundation, Inc.
www.nnpdf.org
National Organization For Rare Diseases
http://www.rarediseases.org
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
National Tay-Sachs & Allied Diseases Association, Inc.
www.ntsad.org
Rare Genetic Diseases in Children
http://mcrcr2.med.nyu.edu/murphp01/homenew.htm
This website contains a wealth of information pertaining to rare genetic diseases that affect children. This is an excellent educational resource.
Society For The Study Of Inborn Errors Of Metabolism
http://www.ssiem.org.uk
United Leukodystrophy Foundation
www.ulf.org
For information on research findings, please see published research reports provided to us by Gaucher disease researchers from around the world.
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