Whether you’re a family that just received a CDG diagnosis or a family that’s been in the CDG community for years, CDG HUB is for you. Every cure odyssey begins with the same first step: knowledge. The purpose of CDG HUB is to be a one-stop content repository, a global online knowledge base for Congenital Disorders of Glycosylation.
CDG HUB is a resource for trusted and curated science content that is accessible to families without formal scientific training and equally satisfying for scientists. Families will unleash their superpowers as advocates, fundraisers and collaborators when they achieve an understanding of the science that forms the basis of their disease and that propels their CDG community on a critical path to the clinic.
There are 100 CDGs and counting. New CDG research is published all the time, building on top of a foundation of previously published work. Where do families even begin to take in all that information? Right here!
CDG HUG is launching at the 4th World Conference on CDG in Portugal with reviews of the scientific literature on 18 CDGs, focusing initially on the N-linked glycosylation pathway and the most common CDG subtypes. Over time, coverage of CDGs will expand and deepen.
In addition to serving as a one-stop repository for CDG science content, CDG HUB will also serve as a matchmaking platform where families can connect to other families, researchers and clinicians. Fill out this contact form and you’ll be notified by email whenever a family, researcher or clinician joins your CDG community.