News and Events

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The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) and CDG CARE jointly request full proposals for funding during the 2022-2023 grant year. These awards are intended to support projects that will provide preliminary data for new, extramural grant submissions.

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CDG Care Newsletter October 2021
October 2021

CDG CARE is excited to offer the newest edition of our 2021 Community Resource Program entitled: The Life of a Special Needs Sibling. We thank our webinar Speaker & Moderator, Courtney List, for sharing her personal experience as a special needs sibling and her invaluable insights into what she has learned and advice for others along this journey.

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2022-Rare-Disease-Day-Symposium

The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) has named Jehan Mousa and Diederik De Graef as their 2021 Career Enhancement Fellows.

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2022-Rare-Disease-Day-Symposium

Join us for the 2022 CDG Scientific & Family Conference, February 25-27, 2022 in San Diego, California. CDG CARE is honored to again be collaborating with Sanford Burnham Prebys to bring you this three-day event hosting educational sessions focusing on the science behind CDG & NGLY1, featuring researchers, clinicians, patients, family members, industry experts, and inspirational advocates.

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Eva Morava
June 22, 2021

Professor Eva Morava-Kozicz’s work in translational research of metabolic disorders and congenital disorders of glycosylation (CDG) is paving the way for future clinical trials and treatments for the CDG community. Read this profile of her work in Rare Revolution Magazine.

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FCDGC COVID Pandemic Experiences Featured in New Article
May 4, 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.

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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. 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!

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FCDGC Apr 2021 News
April, 2021

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.

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FCDGC Jan 2021 News
January, 2021

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.

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NH Study Team
January, 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.

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Kent Lai and Lan Lin
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.

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