Fabry Disease : External Resources

For information on Fabry disease, please refer to the following resources:

• Online Mendelian Inheritance in Man (OMIM):
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
  

• GeneReviews:
  http://www.geneclinics.org

• National Institute of Neurological Disorders and Stroke, NIH: http://www.ninds.nih.gov/disorders/fabrys/fabrys.htm
   
• eMedicine (free registration may be required):
  http://www.emedicine.com/ped/topic2888.htm

The following websites offer additional information and support for individuals and families living with Fabry disease:

• Fabry Support and Information Group (FSIG):
  http://www.fabry.org
   
• Canadian Fabry Association:
  http://www.fabrycanada.com
   
• National Organization for Rare Disorders (NORD):
  http://www.rarediseases.org
   
• Genetic Alliance:
  http://www.geneticalliance.org
   
• UK Society for Mucopolysaccharide Diseases: 
  http://www.mpssociety.co.uk
   
• Global Organization for Lysosomal Diseases (GOLD):
  http://www.goldinfo.org
   
• Children Living with Inherited Metabolic Disease (CLIMB):
  http://www.climb.org.uk
   
• National Tay-Sachs and Allied Diseases Association (NTSAD):
  http://www.ntsad.org
   
• Instituto Canguru: 
  http://www.institutocanguru.org.br
   
• National Society of Genetic Counselors: 
  http://www.nsgc.org

Information for patients and families about participating in clinical trials is available at the following Fabry disease resources and websites:

• http://www.clinicaltrials.gov/ct/info/resources
   
• http://www.fda.gov/oashi/clinicaltrials/clintrialdoc.html

 

To view scientific articles which report data on the use of pharmacological chaperone technology in Fabry disease, please click here.