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

CDG - PIGN

by ashokkannan published 7 days ago
One comment

Multiple EEGs were done to eliminate seizure. He has not had a swallow study yet (Jan 2016).

Jackson Debrou

by misz_millerxox published 7 months ago
One comment

Jackson was born on september 29, 2014 via c-section and it was evident at birth that his breathing was a major issue. he also had very low muscle ...

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.