Disclaimer: This list of web-based materials is intended to be used for educational and informational purposes only. GMDI has not reviewed any of the listed materials for medical accuracy. Any agencies, products or organizations listed below does not imply endorsement by GMDI.
General Metabolic/Genetic/ Nutrition Organizations and Sites
CLIMB – Children Living with Inherited Metabolic Disorders Cook For Love Genetic Alliance March of Dimes National Organization for Rare Disorders (NORD) Rare Disease Clinical Research Network (RDCRN) - Patient Advocacy and Disease Consortiums The Charlie Foundation for Ketogenic Therapies The New England Connection for PKU & Allied Disorders (NECPAD) The Oley Foundation (Home Nutrition Support Community) Genetic and Rare Diseases at the NIH (GARD) National Center for Advancing Translational Sciences at the NIH Orphanet Global Genes Canadian Organization of Rare Diseases (CORD) Rare Diseases International EveryLife Foundation Rare New England The Rare Disease Diversity Coalition
PKU Organizations and Sites
Canadian PKU and Allied Disorders Mid-Atlantic Connection for PKU & Allied Disorders, Inc. (MACPAD) National PKU Alliance National PKU News The National Society for Phenylketonuria
FAOD Organizations and Sites
FOD Family Support Group MitoAction - Mitochondrial Disease Support Group INFORM Network MitoCanada
UCD Organizations and Sites
Connecting Families Urea Cycle Disorders Foundation National Urea Cycle Disorders Foundation
Galactosemia Organizations and Sites
Galactosemia Foundation Homocystinuria Organizations and Sites
HCU Network America
MSUD Organizations and Sites
MSUD Family Support Group
PA/MMA Organizations and Sites
Organic Acidemia Association Propionic Acidemia Foundation
GSD Organizations and Sites
The Association for Glycogen Storage Disease (AGSD) The Association for Glycogen Storage Disease - UK Children's Fund for Glycogen Storage Disease Research Canadian Association for Glycogen Storage Disease
Other Disorders
Glut1 Deficiency Foundation
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Updated May 2023
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