The below links are resources to provide additional GSD information, research and community support:
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.
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
NBS Connect will serve as an internet-based support network for parents, guardians and individuals with inborn errors of metabolism. NBS Connect will capture and analyze information related to inborn errors of metabolism in an effort to assess gaps in service, access to care and to develop best standards of practice for clinical management and connect families to research opportunities. NBS Connect strives to improve the quality of care of individuals with inborn errors of metabolism (IEMs).