There are several resources available to help parents learn more about PMM2-CDG, and about how their child is impacted. The following pages provide links to existing resources, social media groups, registries, research centers, therapy centers and and CDG clinics.
Websites
Organizations
- CDG CARE (Community Alliance and Resource Exchange)
- Portuguese Association for CDG and other Rare Metabolic Diseases
- The Foundation of Glycosylation
Registries
Biobanks
Therapy Centers
Facebook Groups
- CDG Global Alliance Facebook Group – This Facebook group (with almost 1,000 members) connects family members, patients and medical professionals for all CDG sub-types all over the world.
Clinical Trials
- Natural History Study Protocol in PMM2-CDG (CDG-Ia)
- NIH Clinical Research Study
- Using D-Galactose as a Food Supplement in Congenital Disorders of Glycosylation