CDG Care

Congenital Disorders of Glycosylation: a rare inherited metabolic disorder affecting a complex enzymatic process.

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CDG Specialty Clinics Throughout the USA
The CDG Community is fortunate to have multiple experienced and dedicated clinicians who have worked hard to establish CDG Specialty Clinics throughout the United States. At these centers, newly diagnosed and veteran patients will receive comprehensive care management based on their specific CDG type and will learn about the most up to date therapies, treatments and research opportunities available in the field of CDG. To learn more about a CDG Specialty Clinic near you, please visit our Community page for resources and instructions on how to make an appointment.  More>

 

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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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Research and Resources

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

*NEW* – Patient Driven CDG Research Initiatives Underway!

As part of CDG CARE’s effort to advance and diversify patient-led research in the field of CDGs, we now offer Fiscal Sponsorship Opportunities for well-defined and collaborative research projects. We are delighted to share that research programs have been launched in several areas including PIGA-CDG, PIGS-CDG, PIGN-CDG, GMPPA-CDG and ALG8-CDG!

To learn more about the projects that are currently underway, simply click on the links below:

COVID-19 News & Updates: Click HERE

News Highlights and Events

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

CDG Awareness

The first World CDG Awareness Day was officially recognized on May 16, 2016.

And in an effort to continue to raise CDG & NGLY1 Awareness around the globe; each year CDG CARE partners with the World CDG Organization and global patient associations to launch a 2-month campaign leading up to May 16th to promote resources, support events, advance research and raise funds to support families that will help to improve the lives of children and adults diagnosed with CDG & NGLY1.

This is a day that we come together globally and send the message of CDG Awareness and the bond we all share, that despite these uncertain times, we will never lose HOPE!

We are proud to share that through our CDG Community fundraising efforts we have currently funded $200,000 in research projects, $30,000 in family travel scholarships and $18,000 to our fellow CDG Patient Associations to collaborate and support their initiatives.

We hope that this next May 16th, you will join our efforts to raise CDG Awareness in your Community and Nationwide! Joining the Campaign is easy, just Like, Follow and Share our posts from the CDG CARE Facebook Page, Instagram, or Twitter!

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