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.
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 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
FOD Family Support Group
FOD Support.org
MitoAction - Mitochondrial Disease Support Group
INFORM Network
MitoCanada
Galactosemia Foundation
Galactosemia Association of Midwest America (GAMA)
Galactosemia Support Group
The Galactosemia Network
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
International Association for Muscle Glycogen Storage Disease [IAMGSD]
Sophie's Hope Foundation
HCU Network North America
HCU Network Australia
National Organization for Rare Diseases (Homocystinuria specific information)
The Charlie Foundation
Glut-1 Deficiency Foundation
Keto Hope Foundation
MSUD Family Support Group
Genetic Alliance's network
CLIMB (Children Living with Inherited Metabolic Disorders
The New England Connection for PKU & Allied Disorders (NECPAD)
MitoAction
The United Mitochondrial Foundation
Canadian PKU and Allied Disorders
European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU)
flok
Mid-Atlantic Connection for PKU & Allied Disorders, Inc. (MACPAD)
National PKU Alliance
The National Society for Phenylketonuria
Organic Acidemia Association
Propionic Acidemia Foundation
Connecting Families Urea Cycle Disorders Foundation
National Urea Cycle Disorders Foundation
Rare Clinical Disease Research Network: Urea Cycle Disorders Consortium
CLIMB (Children Living with Inherited Metabolic Disorders ) UK
Horizon Parma- UCD in Common: A Community for People Living with UCDs
Adrenoleukodystrophy Foundation (ALD) Congenital Sucrase Isomaltase Deficiency- CSIDcares Glut1 Deficiency Foundation Organic Acidemia Association
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Updated May 2023