"It's a difficult debilitating disease but... people are making progress... people are living with it and there is a lot of hope out there."
~ Brian, Pompe patient

 

 

Online Resources

Pompe.com is always striving to be one of the most comprehensive resources for the Patient/Caregiver and HCP community. While we undergo a site revision, please access the below links that provide information about Pompe disease or related topics.


Many of the websites listed offer support groups, newsletters, and clinical trial updates, including recruitment announcements for upcoming trials. These websites and their contents are maintained by the organizations listed below. Sanofi Genzyme does not review or control the content of non-Sanofi Genzyme websites. These listings do not constitute an endorsement by Sanofi Genzyme of information provided by any other organization.

 

Acid Maltase Deficiency Association (AMDA)
www.amda-pompe.org

Association for Glycogen Storage Disease
http://www.agsdus.org/

Clinical Trials.gov
http://www.clinicaltrials.gov

Genetic Alliance
http://www.geneticalliance.org/

Muscular Dystrophy Association (MDA)
http://www.mdausa.org/

National Organization for Rare Disorders, Inc. (NORD)
http://www.rarediseases.org/

National Society of Genetic Counselors
http://www.nsgc.org/

Office of Rare Diseases (ORD)
http://rarediseases.info.nih.gov

United Pompe Foundation
http://www.unitedpompe.com