You are not alone. Get GSD support in your local community and online groups. Below is a list of support groups and websites recommended by Vitaflo®.
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).