Pompe Disease : External Resources

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

• Online Mendelian Inheritance in Man (OMIM):
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
   
• National Library of Medicince Genetics Home Reference
  http://ghr.nlm.nih.gov/condition=pompedisease
   
• National Institute of Neurological Disorders and Stroke, NIH: http://www.ninds.nih.gov/disorders/pompe/pompe.htm
   
• Association for Glycogen Storage Disease:
  http://www.agsdus.org/html/typeiipompe.htm
   
• GSDNet (Association for Glycogen Storage Disease)
  http://www.agsdus.org/html/emailotherswithgsd.htm
   

The following websites can help individuals with Pompe disease and caregivers learn more about living with Pompe disease:

• Association for Glycogen Storage Disease:
  http://www.agsdus.org
   
• UK Association for Glycogen Storage Disease
  http://www.pompe.org.uk
   
• United Pompe Foundation:
  http://www.unitedpompe.com
   
• Muscular Dystrophy Association
  http://www.mdausa.org
   
• International Pompe Association:
  http://www.worldpompe.org
    
• National Organization for Rare Disorders (NORD):
  http://www.rarediseases.org
    
• Global Organisation for Lysosomal Diseases (GOLD):
  http://www.goldinfo.org/education.aspx
   
• Genetic Alliance:
  http://www.geneticalliance.org
   
• National Tay-Sachs and Allied Diseases Association (NTSAD):
  http://www.ntsad.org
   
• NIH Genetic and Rare Diseases Information Genter: http://rarediseases.info.nih.gov/html/resources/info_cntr.html 
   
• National Society of Genetic Counselors
  http://www.nsgc.org
   
   

Information for Pompe patients and families about participating in clinical trials is available at the following websites

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