Resources

Useful information for individuals and families affected by DHDDS

Helpful Facebook groups

Cure DHDDS & nUS1 community - This private Facebook group connects family members, patients and medical professionals involved in DHDDS research. The group offers support, strategies and advice to all those affected with DHDDS and NUS1 mutations.

CDG Global Alliance – This Facebook group connects family members, patients and medical professionals involved in CDG subtypes all over the world.

CDG UK - This Facebook group supports patients and families affected by all CDG subtypes in the UK.

Useful Websites

Frontiers in Congenital Disorders of Glycosylation (rarediseasesnetwork.org) - This is a consortium set up to conduct research to support the best integrated clinical care for the congenital disorders of glycosylation (CDG).