Skip to main content

Main navigation

  • Our Research
    • Find Diseases We Study
    • Rare Diseases Research Groups & Studies
    • Publications
  • For Patients
    • Patient Organizations
    • Survey on Impacts of COVID-19
    • Resources for Patients and Families
  • For Researchers
    • RDCRN Conference on Clinical Research for Rare Diseases (CCRRD)
      • Resources From Past CCRRD Conferences
    • RDCRN Training Opportunities
    • Other Rare Disease Initiatives
    • NIH Data Sharing
    • Resources for Researchers
  • News
    • Latest News
    • Spotlight Newsletter
  • COVID-19 Research
    • COVID-19 Research News
    • Impacts Survey
    • Impacts Survey Results
  • About Us
    • About Us
    • Contact Us
facebook twitter linkedin RDCRN Members Login
Home
facebook twitter linkedin RDCRN Members Login
  • Our Research
    • Find Diseases We Study
    • Rare Diseases Research Groups & Studies
    • Publications
  • For Patients
    • Patient Organizations
    • Survey on Impacts of COVID-19
    • Resources for Patients and Families
  • For Researchers
    • RDCRN Conference on Clinical Research for Rare Diseases (CCRRD)
      • Resources From Past CCRRD Conferences
    • RDCRN Training Opportunities
    • Other Rare Disease Initiatives
    • NIH Data Sharing
    • Resources for Researchers
  • News
    • Latest News
    • Spotlight Newsletter
  • COVID-19 Research
    • COVID-19 Research News
    • Impacts Survey
    • Impacts Survey Results
  • About Us
    • About Us
    • Contact Us

natural history study

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
Subscribe to natural history study


Your participation makes a world of difference.
Learn How

Stay Up To Date With The Spotlight On Rare Diseases Newsletter

Subscribe

About Spotlight

Spotlight Archive

February 2021
July 2020

Tweets by rarediseasesnet

Tags

MPI-CDG
mucociliary clearance
CMT
Basal Cell Nevus Syndrome
neurovascular disease
DSC
CPIC
Congenital and Perinatal Infections Consortium
coronavirus
Consortia News

Footer Bottom Links

  • Contact Us
  • Website Policies
    • facebook
    • twitter
    • linkedin

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.