Non-Profit and Patient/Parent Organizations

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
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
The National Society for Phenylketonuria

FAOD Organizations and Sites

FOD Family Support Group
MitoAction - Mitochondrial Disease Support Group
INFORM Network

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



Updated May 2023

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