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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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!

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!

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 – World Congenital Disorders of Glycosylation (CDG) Awareness Day!

May 16, 2016 was the first recognized World Congenital Disorders of Glycosylation (CDG) Awareness Day! And in an effort to continue to raise CDG Awareness around the globe; each year CDG CARE launches 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.

On May 16, 2019 the CDG Community came together and officially held the biggest and best global CDG Awareness Campaign effort to date! With an intense and effective social media and email dissemination program, we promoted a new CDG "Just the Facts" Series, a CDG Heroes Spotlight, and targeted Campaign and GoGreen! images which were viewed over 57,000 times! The CDG Community came together and shared social media posts 713 times, resulting in an overall impact of 8,753 positive reactions and comments over the course of just 6 weeks!

Through our 2019 CDG Awareness Day annual fundraising campaign, CDG CARE supporters raised over $26,000 to advance our mission! CDG CARE also recruited volunteers throughout the United States to serve as State Advocate Representatives and request from their respective State Governors that May 16, 2019 officially be Proclaimed as CDG Awareness Day throughout their State! We can stand proud this year knowing that 16 States across the country supported our efforts and the USA was Painted GREEN in support of CDG Awareness Day as represented below! If you are interested in volunteering in future years to help support efforts in your State, please send us an email at proclamation@cdgcare.com TODAY!

We thank all of our CDG families, friends, medical professionals and community supporters for helping us to make May 16, 2019 World CDG Awareness Day our most impactful CDG Awareness Campaign to date! Together we are strong and we will continue to stand united in our cause to bring HOPE to all those affected by CDG!

2020 CDG Scientific and Family Conference! We look forward to joining our CDG Community families and medical professionals at the upcoming CDG Conference being held in San Diego, CA, February 28 - March 1, 2020! This 3-day event will host educational sessions focusing on the science behind CDG, provide valuable resources for families and patients, and present interventional and therapeutic approaches for the management of CDG. To view the preliminary agenda, and venue details, CLICK HERE!

We are also continually seeking support from our engaged Community partners to serve as Conference Sponsors! Please CLICK HERE to learn more about our 2020 Conference Sponsorship Opportunities and help promote the exchange of education, resources and therapeutic approaches for children and adults affected by CDG.

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