|U.S. Legislative Update: ECHO 2019 Act|
Dear ECHO Colleagues:
I’m excited to share the news that new legislation has been introduced in the United States Senate, the Expanding Capacity for Health Outcomes (ECHO) Act of 2019!
The legislation builds on the original ECHO Act of 2016 and the corresponding report from the U.S. Department of Health and Human Services (HHS) released in March of this year.
The bi-partisan measure would direct HHS to establish a grant program to evaluate, develop and expand the use of technology-enabled collaborative learning and capacity building models like Project ECHO in the U.S. You can read more about the legislation in a press release and fact sheet developed by the bill’s sponsors.
We believe this is a significant next step in an ongoing effort across our movement to work with policymakers in Congress, the Administration and in states around the country to ultimately fully integrate…
|Paper: Nutrition management guideline for propionic acidemia: An evidence- and consensus-based approach|
We are pleased to announce availability of our new peer-reviewed paper, Nutrition management guideline for propionic acidemia: An evidence- and consensus-based approach in Molecular Genetics and Metabolism.
The paper may be accessed at the link below:
|SERN Lunch and Learn Announcement Wed, May 15, 2019|
Please join us on Wednesday, May 15, 2019at 12:00 pm (noon) at the
7th Floor Conference Room
Woodruff Memorial Research Building
101 Woodruff Circle
SERN Lunch and Learn Series.
Our speaker will be:
Brian Kirmse, MD
The University of Mississippi
Department of Pediatrics
The title of his presentation is:
“Access to Clinical Genetic Services in Mississippi: Challenges and Solutions”
Pizza will be provided
Please RSVP by Friday, May 10th to firstname.lastname@example.org
Live presentation via internet is available.
Email email@example.com and firstname.lastname@example.org for web reservations.…
|2019 Annual Meeting for SERN/SERGG - July 18-20 in Asheville, NC|
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/…
|25th Annual Metabolic Camp at Emory University|
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…
|Emergency Preparedness for Newborn Screening Programs|
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
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…
|Emergency Preparedness Toolkit for Genetic-Based Inherited Metabolic Disorders|
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/…