The Acid Maltase Deficiency Association was established in 1995 to assist in funding research and to promote public awareness of Pompe disease. Pompe disease is one of a family of 49 rare genetic disorders known as Lysosomal Storage Diseases or LSDs. Pompe disease is also known as Acid Maltase Deficiency or Glycogen Storage Disease type II. It affects an estimated 5,000 to 10,000 people in the developed world.
The Association for Glycogen Storage Disease is a parent and patient oriented support group that is advised by a national, experienced group of medical professionals. The AGSD was established in 1979 in order to create an organization which would be a focus 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, to stimulate research in the various forms of glycogen storage diseases and have the results communicated to the parents, affected individuals and the public as soon as possible.
The AGSD presents a conference each year in the early fall. The conferences are set up to foster communications between families, and between families and professionals who could provide a better understanding of the disease, its implications and recommendations based on current clinical investigations. The approach has been broad-based, including input by physicians, dietitians, nurses, and others. The families also have their own meetings to broaden communications and provide mutual support.