COVID-19 News & Updates
UPDATE Jan. 9, 2021 – The FCDGC Guidance for Adult CDG Patients receiving the COVID-19 Vaccine is now available! Families and Community members can access the recommendation by Clicking HERE.
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! You can 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:
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!
