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…

Please join us on Wednesday, October 24that 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 speaker will be: Allison Foley, MMSc, CGC Certified Genetic Counselor Lysosomal Storage Disease Center Emory Department of Human Genetics The title of her presentation is: “Pompe Disease: Newborn Screening and Georgia Pilot Program Experience.” Pizza will be provided Please RSVP by Friday, October 19thto yadadev@emory.edu Live presentation via 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 19-21, 2018 at Renaissance Asheville Hotel in Asheville, NC. More information available on the SERGG website: http://sergg.org/…

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…

Schedule In-District Meetings NOW! Members of Congress will be working locally May 28 - June 1. Please schedule a meeting with them in your home state to discuss the Medical Nutrition Equity Act (Senate Bill: S. 1194 and House Bill: H.R. 2587). Asking for their support and co-sponsorship locally is KEY. Did you know Senator Grassley agreed to co-lead the MNEA with Senator Casey after a local meeting with two PKU grandparents? He did! Local meetings make a difference. Don't delay, WE NEED YOUR HELP! Scheduling a meeting is easy! Check out the NPKUA Medical Nutrition Equity Act page for step-by-step instructions. You can also go directly to our phone scripts by selecting the links below. Phone script for scheduling an in-district meeting with your U.S. Representatives Phone script for scheduling an in-district meeting with your U.S. Senators YOU CAN…