| The Association for
Glycogen Storage Disease was established in 1979
in order to create an organization which would
be a focus for parents of and individuals with
glycogen storage disease (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.
This website provides basic
information about the glycogen storage diseases.
The information is intended to be of use to
people affected by one of the glycogen storage
diseases, their families, and other interested
parties.
Some forms of GSD cause
little in the way of illness, while others are
life threatening. Included in this site is a
description of the general symptoms, associated
problems, current treatment, and long-term
outcome for the most commonly diagnosed glycogen
storage diseases. It does not do justice to the
difficulty patients and their families’
experience, and their deep desire for improved
forms of treatment or ultimately total
correction.
Diagnosis of a rare
genetic disease can be a very lonely experience
for the patients and their families, and in some
cases, for their doctors also. These pages are
intended to help reduce that sense of isolation
by providing not just information but also a
point of contact.
The President of the
Association for Glycogen Storage Disease is
Andrew O’Toole, he may be contacted at:
president @ agsdus.org |
