Welcome!

I'm VikTheViking85 and this year I am raising funds for CDG UK

CDG UK is the national charity supporting those affected by Congenital Disorders of Glycosylation (CDG). They support UK patients and families like mine in many ways ranging from attending international conferences, gathering information to feed back to families, organising events that bring families together forming bonds of friendship, Organising parent/carer focused conferences to deliver a greater understanding of this very rare group of disorders and much more.

My daughter Miss G was diagnosed with ALG11-CDG in 2021 and is thought to be the oldest living with this condition, from approximately 16 known cases world wide, so as you can imagine finding information and support alone could be quite daunting but thanks to CDG UK we have a whole network of people and professionals to connect with and get support from.