We have launched our crowdfunding campaign to celebrate the 25th Annual Metabolic Camp, which will take place June 17-22, 2019! Please share the message and crowdfunding link below with your own network of family, friends, and colleagues. Help us to reach our $25,500 goal by January 24, 2019: Donate TODAY to the 25th Annual Metabolic Camp at Emory University! Provide education to promote healthy pregnancies and prevent developmental delay that is prevalent in the PKU population. Help MetCamp reach its goal of $25,000 by January 24, 2019!http://momentum.emory.edu/EmoryMetabolic…

Please join us on  Wednesday, January 30, 2019, at 12:00 pm (noon) at the 7th Floor Conference Room Woodruff Memorial Research Building 101 Woodruff Circle   for our SERN Lunch and Learn Series. A flyer is attached for your review. Our speakers will be: Elizabeth Krupinski, PhD, FSIIM, FSPIE, FATA, FAIMBE Professor and Vice Chair for Research Emory Department of Radiology and Imaging Sciences The title of her presentation is: “Introduction to Telemedicine for Clinicians” Rani Singh, PhD, RD, LD Professor PI: Southeast Regional Genetics Network (SERN) Emory Department of Human Genetics The title of her presentation is: “Emerging Telegenetics Models for Medical Nutrition Therapy” Pizza will be provided Please RSVP by Friday, January 25th to tpringl@emory.edu Live presentation via the internet is available to a limited number of sites. Email astembr@emory.edu for web reservations.…

The next annual SERN/SERGG meeting will be held July 18-20, 2019 at Renaissance Asheville Hotel in Asheville, NC. More information available on the SERGG website: http://sergg.org/…

Emergency Preparedness for Newborn Screening Programs * AMCHP NBS ConPlan document * How EMAC works during emergencies * Clinical experience and NBS efforts during Hurricane Katrina * NBS follow-up during Hurricane Maria Speakers: Kate Taft, MPH Associate Director for Child and Adolescent Health at the Association of Maternal & Child Health Programs (AMCHP) Gerrit Bakker, BS Senior Director for Public Health Preparedness at the Association of State and Territorial Health Officials (ASTHO) Hans Andersson, MD, FACMG Karen Gore Chair of Human Genetics and Director of the Hayward Genetics Center at the Tulane University Medical School Sulay Rivera-Sánchez, MS, PhD Associate Director of the Puerto Rico Newborn Screening Program…

The Emergency Preparedness Toolkit for Genetic-Based Inherited Metabolic Disorders was developed by the SERN Consumer Alliance Emergency Preparedness Workgroup. The toolkit includes disorder-specific lists of supplies needed in case of emergency, as well as a general list of basic emergency preparedness supplies. It is available to be printed, posted, and shared:  http://southeastgenetics.org/ept/…

FDA News Release The U.S. Food and Drug Administration today permitted marketing of the Seeker System for the screening of four, rare Lysosomal Storage Disorders (LSDs) in newborns. The Seeker system is designed to detect Mucopolysaccharidosis Type I (MPS I), Pompe , Gaucher and Fabry . It is the first newborn screening test permitted to be marketed by the FDA for these disorders. LSDs are a group of rare, inherited metabolic disorders in which enzymes (proteins) that normally eliminate unwanted substances in the body's cells are not at normal levels or functioning properly. According to the U.S. Department of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children, MPS I, Pompe, Gaucher and Fabry occur in approximately 1 in 1,500 to no more than 1 in 185,000 newborns and children, depending on the disorder. If not detected…