Resources

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

• NORD Rare Disease Information – PMM2-CDG
• NIH information on Congenital disorders of glycosylation

Organizations

• CDG CARE (Community Alliance and Resource Exchange)
• Portuguese Association for CDG and other Rare Metabolic Diseases
• The Foundation of Glycosylation

Registries

• Rare Commons
• CDG Connect

Biobanks

• Coriell Institute – Human Genetic Cell Repository

Therapy Centers

• NAPA Therapy Center

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

CDG Clinics

CDG Map