Co-funding Institute(s):
National Human Genome Research Institute (NHGRI)
Human Glycosylation Disorders Network: Future Directions
November 30, 2008
Sanford Children’s Hospital, Sioux Falls, SD or NIH Campus/Stone House/Cloister
Contact for additional information: Dr. Donna Krasnewich, NHGRI (301) 402-8255
DescriptionThe mission of this group is to discuss and consider the following topics: (1) optimizing awareness, (2) coordinating and optimizing diagnostic testing, (3) approaches to finding glycobiologic and molecular mechanisms in cases without known etiologies, (4) development of a Glycosylation Disorders Database and Tissue Repository, and (5) development of “Expert Clinics” to optimize clinical care of these rare individuals.