The World CDG Organization, the international patient-led CDG & Allies -PPAIN research network and the Portuguese Association for CDG are happy to announce the opening of TWO NEW research projects: 1. The development of a quality of life tool, and; 2. The assessment of vaccination and/or infection-related coping skills and actions among a rare disease community.

Dr. Andrew Edmondson from Children’s Hospital of Philadelphia, USA, was present on the September’s PMM2-CDG Collaboration call organized by Amour Fund to share with us the latest updates about COVID-19 and the CDG experience related with this topic. The recording is now available. Check it out!

Research projects that empower, make a difference in and strive to improve the quality of life of CDG children and adults

New paper about immunological involvement in CDG (Video Abstract)

Dr Belén Pérez is a researcher who is working on finding effective treatments for CDG

This is the 1st Edition of the World CDG Organization Newsletter

New insights into immunological involvement in Congenital Disorders of Glycosylation (CDG) from a people-centric approach: A project led by CDG & Allies -PPAIN and made possible by the World #CDGCommunity

Sandro Bellinzis talks about his (and his family's) CDG journey which led up to the creation of the patient association CDG Italia

Dr Ethan Perlstein is a creative researcher and entrepreneur invested in helping the CDG Community