CDG Care

Welcome to the CDG Community!

» The 2026 CDG Education & Research Miniseries is now LIVE!
Watch expert presentations from the 2026 CDG Scientific & Family Conference and gain valuable insights from leading clinicians, researchers, and families. Subscribe to the CDG CARE YouTube Channel and explore the sessions below — new episodes are released every week!

Living with Epilepsy in CDG | Dr. Erik Eklund

Endocrinopathies in PMM2-CDG | Dr. Kiki Sarafoglou

Hormone Regulation and Bone Metabolism in CDG | Dr. Brad Miller

» Newly diagnosed? Click HERE or on the image below to view CDG CARE’s Online Patient Brochure. You can also email us at info@cdgcare.org for personalized resources, website tips, and helpful contacts to support your family’s journey.

» JOIN the CDG CARE Family Resource Network and CONNECT with CDG families around the globe TODAY!

» To support CDG CARE and sport year-round CDG apparel, visit the CDG CARE Merchandise Store by Clicking HERE, or on the link below!

» To access the most up-to-date scientific resource designed for CDG researchers, clinicians, patients and families, visit CDG Hub and sign up for the CDG Hub newsletter by clicking on the link below:*****************************************************************

Join the CDG Global Alliance – a private Facebook group for parents, patients and immediate caregivers of individuals who have a confirmed diagnosis of CDG.

Like and Follow the CDG CARE Facebook Page – a public Page open to all families and community supporters to help keep current with the latest news, research and opportunities within the CDG Community.

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To view the latest edition of the CDG CARE E-Newsletter Click HERE

Global CDG Clinical & Research Network (CDG-CRN)

CDG CARE is proud to launch the Global CDG Clinical & Research Network (CDG-CRN) – a new international effort connecting clinicians, researchers, laboratories, industry, and patient advocates to strengthen collaboration and accelerate progress in CDG research and care. Learn more and join the movement HERE.

CDG Biorepository Launch

CDG CARE has partnered with COMBINEDBrain to launch the new CDG Biorepository, helping families contribute valuable biological samples to support future CDG research, biomarker discovery, and therapeutic development. To learn more and express interest in participating in an upcoming ROADSHOW, send us an email to: info@cdgcare.org.

Calling all CDG Patient & Families – Help Shape the Future of CDG Research!

Your voice matters! CDG CARE is asking patients and families to help shape future research priorities by participating in the Patient Prioritized Research Agenda (PPRA) Survey. We need 100 participants by June 7th to ensure the priorities of the CDG community are heard – complete the survey HERE.

Family-Led CDG Research Initiatives Underway!

CDG CARE is proud to support and expand family-led research through our Fiscal Sponsorship Program, designed for collaborative, well-defined projects. Research efforts are now active in several CDG types, including ALG1-CDG, ALG8-CDG, ALG13-CDG, GMPPA-CDG, PIGA-CDG, PIGN-CDG, PIGS-CDG, and PMM2-CDG. If you are interested in learning more, send us an email at info@cdgcare.org.

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May 16th is World Congenital Disorders of Glycosylation (CDG) Awareness Day!

World CDG Awareness Day was first recognized on May 16, 2016. Each year, CDG CARE leads a 2-month global campaign to raise awareness, promote resources, support families, and advance research.

Together, our community has raised $1.8 million, funding over $980,000 in research and providing more than $160,000 in direct assistance to 77 CDG & NGLY1 families.

This campaign is a powerful reminder that, no matter the challenges, we will never lose hope. Visit our CDG Awareness Day page HERE and join us this May 16th to raise awareness in your community – because every voice helps move CDG research, therapies, and hope forward!

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