Online Resources

The links below 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.

Physician Resources

Clinical Trials.gov

Information about many trials can be found at the US government's site on clinical trials.
http://www.clinicaltrials.gov

Muscular Dystrophy Association (MDA)

The Muscular Dystrophy Association (MDA) website lists over 235 hospital-affiliated clinics in the United States that offer quality medical care available from doctors, nurses and therapists experienced in dealing with neuromuscular diseases. These facilities may help patients manage the muscular aspect of Pompe disease.
http://www.mdausa.org/

Office of Rare Diseases (ORD)

The Office of Rare Diseases (ORD) provides information on almost 7,000 rare diseases including current research, publications from scientific and medical journals, completed research, and ongoing studies.
http://rarediseases.info.nih.gov

Pompe Patient Organizations within the United States

Acid Maltase Deficiency Association (AMDA)

The Acid Maltase Deficiency Association (AMDA) was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, another name for Pompe disease. This US organization is a member of the International Pompe Association.
Phone: (210) 494-6144 or (210) 490-7161
www.amda-pompe.org

Association for Glycogen Storage Disease

The Association for Glycogen Storage Disease is a parent and patient oriented support group based in the United States. The AGSD was established for parents of and individuals with GSD to communicate, share their successes and concerns, share useful findings, provide support as needed, create an awareness of this condition for the public, and to stimulate research in the various forms of glycogen storage diseases.
http://www.agsdus.org/

United Pompe Foundation

The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that may not be covered by insurance. The Foundation also hopes to raise public awareness of Pompe disease.
http://www.unitedpompe.com

Advocacy & Support Services

Genetic Alliance

The Genetic Alliance is an international coalition comprised of millions of individuals with genetic conditions and more than 600 advocacy, research and health care organizations that represent their interests.
http://www.geneticalliance.org/

National Organization for Rare Disorders, Inc. (NORD)

The National Organization for Rare Disorders, Inc (NORD) is a not-for-profit federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them.
http://www.rarediseases.org/

National Society of Genetic Counselors

National Society of Genetic Counselors provides information on the genetic counseling profession and its guiding principles. The website identifies genetic counseling services by geographic region.
http://www.nsgc.org/

Ask a Medical Question

Genzyme Medical Information can answer questions about Pompe disease.

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Find Diagnostic Labs

Get a list of laboratories that can perform enzyme assays and other useful tests to aid in the diagnosis of Pompe disease.

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(Intended for the U.S. only)

Pompe Registry

Find out about the Pompe Registry, an ongoing, observational database that tracks natural history and outcomes of patients with Pompe disease.

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