How do I find a center of excellence in Pompe disease?
If possible, it is best to be followed by a doctor who has experience and expertise in Pompe disease. These doctors usually work in a clinic associated with the Muscular Dystrophy Association (MDA) or with a Lysosomal Storage Disease (LSD) clinic. MDA clinics can be found at www.mda.org. If you have Pompe disease and have a case manager from Sanofi Genzyme, your case manager can give you the contact information for LSD or MDA clinics as well (www.sanofi.com). Below is a small list of LSD clinics that follow patients with Pompe disease.