CDG Care

Welcome to the CDG Community! We encourage our newly diagnosed families to Click HERE, or on the image below, to access CDG CARE’s NEW Online Patient Brochure. Please also send as an email at info@cdgcare.org to receive a list resources to help you navigate this website, important highlights and helpful contacts for your family throughout this journey!

» JOIN the CDG CARE Family Support Network and CONNECT with CDG & NGLY1 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.

CDG CARE announces launch of the 2023 Emmett’s Legacy Fund Medical/Therapeutic Equipment Grant Program! The deadline for applications is March 31, 2023! To learn more and submit your application, CLICK HERE today!

Travel Support & 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 and worldwide who are all members of the Frontiers in CDG Consortium (FCDGC). At these centers, newly diagnosed and veteran patients receive comprehensive care management based on their specific CDG type and learn about the most up to date therapies, treatments and research opportunities available in the field of CDG. CDG CARE also offers travel support for families to receive expert consultation from the CDG specialists at our research centers. To access the CDG CARE travel application form, Click HERE. And 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, or send us an email at info@cdgcare.org.

More>

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

Research Opportunity for all GPI Anchor Disorder Patients and Families!

A new patient registry has been designed and launched to collect vital data from all patients diagnosed with CDG types under the classification of GPI Anchor Deficiencies. Valid and reliable data is crucial to advancing drug therapies and development. Through this registry, and the collection of patient-reported data from families around the globe, the GPI Anchor Disorder community will be one step closer to making treatments a reality. To learn more and participate in this 15-60 minute survey, Click HERE or on the image below:

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, PIGW-CDG, GMPPA-CDG and ALG8-CDG!

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

More>

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 & NGLY1 Awareness around the globe; each year CDG CARE launches a 2-month campaign leading up to May 16th to promote resources, advocate for awareness, 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 >$500,000 in research projects, >$30,000 in family travel scholarships and >$20,000 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!

More >

Where CARE Grows

Resources

Research

News Highlights and Events