The CDG Clinical & Research Network
The CDG Clinical & Research Network (CDG CRN) brings together academia, industry, and clinical experts to accelerate progress for individuals and families affected by CDG. By fostering regular collaboration and shared learning, the network helps move research forward and translate discoveries into meaningful care.
CDG CRN Membership
Every day matters for individuals and families living with CDG.
Through the CDG CRN, we are uniting expertise across disciplines working faster and smarter together - turning collaboration into progress and hope.
Membership Benefits
✔ Opportunities to engage with patient registries, natural history efforts, and biobanking initiatives as they are developed✔ Invitations to participate in training workshops, educational webinars, and collaborative grant proposals
✔ Opportunities to contribute to working groups, task forces, and consensus-building publications as initiatives mature
✔ Future access to shared resources, such as standardized diagnostic approaches, patient-reported outcome measures (PROMs), and data collection templates as they become available
Who Should Join
● Clinicians in genetics, neurology, metabolism, gastroenterology, immunology, endocrinology, nutrition, and related specialties● Researchers focused on glycosylation biology, rare diseases, diagnostics, or therapeutic development
● Institutions serving CDG patients or aiming to expand diagnostic and clinical capacity in rare diseases
● Laboratory clinicians, including experts in biochemical genetics, clinical genomics, metabolomics, and glycomics, who contribute to diagnostic testing and protocol development
Initiatives & Priorities
✔ Opportunities to help develop clinical guidelines, diagnostic pathways, and educational resources as initiatives evolve✔ Potential participation in multi-center research, including observational and therapeutic studies as they launch
✔ Opportunities to engage in a growing global platform for scientific exchange, shared learning, and collaborative innovation
✔ Opportunities to collaborate with researchers, clinicians, caregivers, and families within a patient-centered model, with potential for future leadership and authorship roles
This live, interactive map represents the growing global CDG CRN community and will continue to expand as new members join. Each addition strengthens collaboration, shared learning, and collective efforts to advance patient care across the CDG community worldwide.
