ABOUT CDG UK
Who are CDG UK
We are the national charity (Registered Charity Number 1191342) supporting those affected by Congenital Disorders of Glycosylation (CDG). Partnered with the UK Genetic Disordered Partnership Network, we support UK patients and families.
We were set up in 2013 by the parents of affected families so we understand what is important. We know that a rare diagnosis can be isolating, and we wish to extend a hand of friendship to others facing the same situation.
CDG may be rare but you are not alone!
Watch this video to find out more about us.
Our patron: Dr Stephanie Grunewald
We work closely with our patron, Dr Stephanie Grünewald of Great Ormond Street Hospital (GOSH), to distribute our information, and to keep updated on the latest developments in the world of CDG. She is an expert in this rare field and helps us to provide the information to the community of CDG families in the UK.
Dr Grünewald sees nationally and internationally referred CDG patients, coordinates diagnostics and research at GOSH and ICH, and collaborates with national and international clinical and scientific CDG networks.