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

• Frontiers in Congenital Disorders of Glycosylation (FCDGC)
• CDG Canada
• 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.

Educational Materials (Source FCDGC)

• Caring for Your Child With CDG
• Congenital Disorders of Glycosylation (CDG)
• A Message for Parents of Children With CDG
• FCDGC Updated Guidance for CDG Patients during COVID19 Pandemic
• Frontier in Congenital Disorders of Glycosylation Consortium

CDG Clinics

CDG Map