News and Events
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.
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. The FCDGC/CDG-CARE Pilot Grant Program supports investigator-initiated studies that address translational research in CDG. Each researcher receives $50,000 in support for their work. Congratulations to them both!
CDG CARE is thrilled to share our newest program for the global CDG and NGLY1 patient community!
The CDG CARE Family Support Network (FSN) has been created to help families connect and stand united to advance resources, advocacy, and research for all CDGs.
It seems like so long ago, but at this time last year, the CDG CARE Board was in the midst of planning the final stages of the 2020 SBP Rare Disease Day Symposium and 3rd Biennial CDG Scientific & Family Conference! In collaboration with the Sanford Burnham Prebys Medical Discovery Institute, we hosted 52 CDG families and 116 medical professionals and scientists from around the globe in San Diego, CA. We were honored to be able to provide $7,000 in travel scholarship opportunities for families and professionals to attend this unique and educational 2.5-day event.
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.