CDG Care

CARE Grows as global collaboration and partnerships raise awareness and strengthens the future for our Community.

CARE Grows with every medical and therapeutic advancement that leads to improved care.

CARE Grows as donor commitment broadens to support new educational and research opportunities.

CARE Grows with every new patient who is properly diagnosed.

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 Sept. 12, 2020 – The FCDGC Updated Guidance for CDG Patients during COVID-19 Pandemic is now available! Families and Community members can access the Statement 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.

CDG CARE expands services and research initiatives to support NGLY1 community! Visit the updated NGLY1 website 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 and current funding opportunities for eligible CDG researchers and CDG-related research projects, CLICK HERE to visit our Research Page!

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

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 Cerecor 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!

2020 Celebrate and GIVE! CDG CARE is asking our community to join together and help us find a reason to celebrate 2020 as we participate in the Global Day of Giving on Tuesday, December 1st. NOW through December 1st, all donations to CDG CARE will be MATCHED up to a fund pool of $20,000! Please Click HERE to read our full Celebrate and GIVE! Announcement OR visit our Giving Tuesday fundraising platform by Clicking HERE today!

Read and share our CDG CARE Newsletter!

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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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