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

What is wrong with me?

by ElinFiona published 1 day ago
One comment

Have you ever felt a vacuum moving through your arms and legs, like your inner skin are ripped off? This happened to me January 2016. It was extrem...

Viola

by Cossi74 published 3 months ago
One comment

Viola was born in Rome on 09/02/2014, her weight was 3,800 kg and apparently was a very healthy child. She is the third child, after two boys, 3 an...

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.