CDG Care

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>

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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COVID-19 News & Updates

UPDATE Nov. 4, 2021 – The FCDGC Updated Guidance for CDG Patients and Families receiving the COVID-19 Vaccine is now available! Families and Community members can access the recommendation by Clicking HERE.

Jan. 9, 2021 – The FCDGC Guidance for Adult CDG Patients receiving the COVID-19 Vaccine can be accessed by Clicking HERE.

Sept. 12, 2020 – The FCDGC Updated Guidance for CDG Patients during COVID-19 Pandemic is available by Clicking HERE.

The STATEMENT ON COVID-19 was created in collaboration with CDG medical professionals, institutions and patient associations to give global recommendations for CDG families. The Statement is available in 11 languages and can be accessed by Clicking Here.

Frontiers in CDG Consortium

The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) is one of 20 federally funded rare disease Consortia with the aim to advance medical research by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. To learn more about this groundbreaking research advancement for the CDG Community, CLICK HERE to visit our Research Page! You can also visit the FCDGC website by CLICKING HERE.

We are also delighted to share that through the support of the NIH funded FCDGC, the following patient educational booklets are now available to our community:

*NEW – GPI Anchor Disorders: A Subtype of Congenital Disorders of Glycosylation (CDG)

Congenital Disorders of Glycosylation (CDG)
Caring for Your Child with CDG
A Message for Parents of Children with CDG

CDG Connect Patient Insights Network (PIN)

CDG CARE is proud to partner with the Invitae Patient Insights Network (PIN) and CDG Canada to offer the first international CDG Patient Registry – CDG Connect! CDG Connect serves as the centralized global network for CDG patients, researchers and drug developers to amplify the voice of CDG patients and optimize the search for better treatments.

CLICK HERE to enroll in CDG Connect TODAY! Share your experiences, access data and insights and advance research for CDG. Together, we can build the CDG Connect Community!

2022 Rare Disease Day Symposium and CDG/NGLY1 Family Conference
Registration is OPEN! Join us for the 2022 CDG/NGLY1 Scientific & Family Conference, February 25 – 27, 2022 in San Diego, California!

We will continue to release updated program content for this collaborative event, but you can easily CLICK HERE to visit our event page, view the preliminary agenda, venue details and Buy Your Tickets to reserve your spot TODAY!

Sign up for the CDG CARE Quarterly E-Newsletter
Read and share our CDG CARE Newsletter! For more information and updates on our community activity, latest press and exciting news, sign up below:

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

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

And in an effort to continue to raise CDG Awareness around the globe; each year CDG CARE partners with the Portuguese Association for CDG (APCDG) 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.

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 $150,000 in research projects, $15,000 in family travel scholarships and $10,000 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!

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