As awareness of Pompe disease grows, so does the number of groups and websites that support the Pompe community and others living with genetic disorders. Clicking on the links below will take you to other sites with 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.
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
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.
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.
David W. Hamlin
Phone: (559) 227-1898
Advocacy & Support Services
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.
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.
National Society of Genetic Counselors
National Society of Genetic Counselors provides information on the genetic counseling profession and its guiding principles. The website helps locate genetic counseling services in specific areas.
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.
Information about many upcoming trials that are actively recruiting patient volunteers can be found at the US government's site on clinical trials.
Office of Rare Diseases
The Office of Rare Diseases provides information on more than 6,000 rare diseases, including current research, publications from scientific and medical journals, completed research, and ongoing studies.
These websites and their contents are maintained by the organizations listed above. Genzyme does not endorse these sites nor is it responsible for the content or maintenance of these sites.