World CDG Organization

The World CDG Organization is an information and community resource focused on congenital disorders of glycosylation (CDG). Its website brings together accessible information intended to help people with CDG, families, healthcare professionals, researchers, and the wider community better understand these rare conditions. Topics include causes, symptoms, diagnosis, treatment, epidemiology, immunology, quality of life, and the experiences of people living with CDG.

The organization also provides research and care resources, including information about clinical trials, drug development, therapies, diagnostic and research reference centers, specialists, and care guidelines. Its educational materials include articles, infographics, a glossary, frequently asked questions, and guidance on finding and understanding scientific information. Through awareness campaigns, events, conferences, and community initiatives, it supports advocacy and connection across the CDG community. The site features World CDG Day, Rare Disease Day, online seminars, and the CDG Magazine, alongside resources for families and professionals. It also highlights CDG and Allies, a community-centered research network, and shares updates intended to promote reliable information, informed healthcare decisions, and participation in research.