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.
- 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
- 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