The Association for Glycogen Storage Disease (UK) (The AGSD (UK)) exists to support families touched by any one of the Glycogen Storage Diseases (GSDs). The Pompe Group specialises in understanding the needs of families touched by GSD Type II, Pompe Disease.

Alliance Maladies Rare represents LSD patient support groups throughout France.

Battens Disease Family Association offers support to families affected by Battens Disease.  

Gauchers Association offers support to families affected by Gaucher's Disease.

Hide and Seek is a community of people dedicated to finding treatments and cures for a devastating genetic condition called Lysosomal Storage Disease.

The Society for Mucopolysaccharide Diseases (the MPS Society) is a voluntary support group founded in 1982, which represents from throughout the UK over 1200 children and adults suffering from Mucopolysaccharide and Related Lysosomal Storage Diseases including Fabry Disease, their families, carers and professionals. 

National Tay-Sachs and Allied Disease Association Inc is organization offering support and programs geared to families affected by Tay-Sachs Disease and over 40 other fatal degenerative genetic disorders. 

NORD (National Organisation for Rare Disorders) is a unique federation of individuals and organizations working together to build a better world for people affected by rare diseases

Save Babies Through Screening Foundation UK is a non-profit making charitable organization run by volunteers. Their mission is to improve and save the lives of children by working to prevent disabilities or early death resulting from diseases that are both detectable through newborn screening and treatable. Saving Babies Through Screening is also a patient advocate group for Krabbe Leukodystroply. 

 Vaincre les Maladies Lysosomales Society was created by a group of parents of children suffering from lysosomal storage disorders. 

VKS (Adults, Children and Metabolic disorders) is one of the 350 patient organisations in The Netherlands supporting patients with a specific disease.