PATIENT ORGANIZATION WEBSITES

PROFESSIONAL WEBSITES

  • Genetic and Rare Diseases Information Center
    Established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), the Genetic and Rare Diseases Information Center employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals, and biomedical researchers.
  • LGMD-Diagnosis.org
    LGMD-diagnosis.org is a diagnostic program for individuals without a genetic explanation for their muscle weakness and is maintained by the consortium of foundations endorsing this diagnostic initiative. It offers both an online quiz for individuals and a new physician application to determine eligibility for free genetic sequencing. Eligible individuals who consent to participate will send in a saliva sample for analysis and will receive a genetic report that they can discuss with their physician for genetic counseling and proper disease management. 35 genes are tested for variants and results are provided directly to the patients free of charge. The website also provides links to all the foundations in this consortium. www.lgmd-diagnosis.org
  • Pompe Specialists in the U.S
    Need to find a Health Care Professional / Specialist in your area?

    The U.S. News Doctor Finder includes nearly all physicians in the U.S.
    You can search by:
            Specialty
            Location
            Name
  • Sanofi Website

PATIENT WEBSITES

MEDICAL WEBSITES

 Acid Maltase Deficiency Association

GET INVOLVED

Your generous contribution will go a long way into improving the quality of life of Pompe Disease Patients worldwide. Donations go towards Pompe Disease Research.

If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:

info@amda-pompe.org

AMDA

PO Box 700248

San Antonio, Texas 78270 USA