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What is 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.

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More members stories

Latest Member Stories

One Mother’s Journey: Parenting an Adult Child with CDG

by RareConnect team published 3 months ago 3 comments

School transitions and IEPs (Individualized Education Plans) were soon added to our already unplanned and over-extended agenda. Oh, yes, and there ...

Tana the amazing teacher

by staceyvogele published 3 months ago No comment

Tana is 12 years old. She has CDG 1C and we only found out in Nov. 2013. She is non mobile, non verbal, has cortical visual impairments, hearing ...