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Frontiers in Congenital Disorders of Glycosylation Consortium

Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) logo
New Genetic Marker Identified for Congenital Disorders of Glycosylation
July 08, 2021

A new genetic cause of Congenital Disorders of Glycosylation (CDG) has been identified, according to a recent study in The American Journal of Human Genetics. This means a blood sample can now confirm diagnosis of this form of CDG, notes Andrew C. Edmondson, MD, PhD, an attending physician in Human Genetics and Metabolism at Children’s Hospital of Philadelphia and co-author on the study. Edmondson is one of the founding members of Frontiers in Congenital Disorders of Glycosylation (FCDGC).

Frontiers in Congenital Disorders of Glycosylation Consortium
FCDGC
Congenital disorders of glycosylation
CDG
New Research
Rare Disease Research Challenges, Opportunities Due to COVID-19 Featured in New Article
Rare Disease Research Challenges, Opportunities Due to COVID-19 Featured in New Article
May 04, 2021

Challenges in conducting clinical research in the midst of the COVID-19 pandemic are spotlighted in an article from three consortia of the Rare Diseases Clinical Research Network (RDCRN). Their contribution was featured in the latest issue of Rare Neurological Diseases Special Report.

Frontiers in Congenital Disorders of Glycosylation Consortium
FCDGC
Myasthenia Gravis Rare Disease Network
MGNet
Global Leukodystrophy Initiative Clinical Trials Network
GLIA-CTN
Heather Flanagan-Steet and Steven Sloan, 2021 Pilot Grant Winners
FCDGC Announces 2021 Pilot Grant Award Recipients
April 19, 2021

The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC), in close partnership with CDG CARE, has awarded 2021 pilot grants to Heather Flanagan-Steet, PhD and Steven Sloan MD, PhD.

Frontiers in Congenital Disorders of Glycosylation Consortium
FCDGC
Pilot Grant
CDG
The FCDGC natural history study team meeting via Zoom
FCDGC Natural History Study Reveals Liver Implications for Patients with CDG
January 27, 2021

A natural history study by the Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) is uncovering new insights on liver function in patients with congenital disorders of glycosylation (CDG). A paper published recently in the Orphanet Journal of Rare Diseases based on findings from the study recommends that all CDG patients have at least yearly comprehensive screening for liver disease, including physical exam, lab work, and imaging with ultrasound and elastography.

Frontiers in Congenital Disorders of Glycosylation Consortium
FCDGC
Congenital disorders of glycosylation
natural history study
Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC)
Researchers Establish New Consensus Guidelines for Congenital Disorders of Glycosylation
December 07, 2020

Health care providers now have a road map for treating two types of congenital disorders of glycosylation: MPI-CDG and PGM1-CDG. A team of international experts from the Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) published new guidelines for the diagnosis and management of MPI-CDG and PGM1-CDG in the Journal of Inherited Metabolic Disease.

Frontiers in Congenital Disorders of Glycosylation Consortium
FCDGC
MPI-CDG
PGM1-CDG
Kent Lai, PhD, and Lan Lin, PhD
FCDGC Announces 2020 Pilot Grant Award Recipients
September 11, 2020

The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) has awarded 2020 FCDGC Pilot Grants to Kent Lai, PhD, and Lan Lin, PhD.

FCDGC
Frontiers in Congenital Disorders of Glycosylation Consortium
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The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). The RDCRN websites are hosted by the network’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, which is funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under grant number TR002818.