Welcome - Congenital Disorders of Glycosylation (CDG) Community

What is Congenital Disorders of Glycosylation (CDG) ?

Congenital Disorders of Glycosylation (CDG), formerly called carbohydrate-deficient glycoprotein syndrome, are a group of very rare inherited metabolic disorders that affect a process called glycosylation.

Source: Participating patient organizations visible below

Congenital Disorders of Glycosylation (CDG) Resources

More members stories

Latest Member Stories

Our Erik

by alexisheiselman published about 1 month ago

Our sweet Erik was born a 'healthy' baby on 11-28-2012. The pregnancy and birth were both normal and Erik's first few months of life seemed pretty ...


by Jilba31 published 2 months ago
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Rego and Lennon are amazing little boys. Everyday is a new adventure with out own small miracles happening. They are both makings progress, at thei...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.