SERN | Southeast NBS & Genetics Regional Collaborative

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Consumer Alliance

Overview

The Southeast Regional Genetics Network (SERN) Consumer Alliance is a working group of passionate parents, patients, caregivers, and advocates across the Southeast that represent an array of rare genetic disorders. This group has participation from Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Puerto Rico, and the US Virgin Islands. Since its inception in 2007, the Consumer Alliance has focused on diversifying our representation and strengthening our leadership in each state. Our areas of focus include: advocacy, caregiver support, genetic testing, newborn screening awareness, and emergency preparedness. 

Membership

Florida

Melissa Perez

Jodi Kotrady-Hatin

Linda Starnes

Tennessee

Jessica Stack

Alabama

Julie Tucker

Georgia

Kristen Vanags

Shiela Ryan

South Carolina

Amber Miliote

North Carolina

Frances Beasley, Chair

Brittany Labore

Louisiana

Jackie Parker

Shannon Holland

Mississippi

Shannah Hudson

Puerto Rico

US Virgin Islands

Resources/Activities

Emergency Preparedness Toolkit

General Emergency Preparedness Supply List Standard Layout Dyslexic-friendly Layout
Full Emergency Preparedness Toolkit (All disorders on one page) Standard Layout Dyslexic-friendly Layout
Glutaric acidemia type I (GA-1) Standard Layout Dyslexic-friendly Layout
Long-chain L-3-Hydroxy acyl-CoA dehydrogenase deficiency (LCHAD) Standard Layout Dyslexic-friendly Layout
Medium-chain acyl-CoA dehydrogenase deficiency (MCAD) Standard Layout Dyslexic-friendly Layout
Ornithine transcarbamylase deficiency (OTC) Standard Layout Dyslexic-friendly Layout
Phenylketonuria (PKU) Standard Layout Dyslexic-friendly Layout
Propionic acidemia (PROP/PPA) Standard Layout Dyslexic-friendly Layout
Tyrosinemia type I (TYR-1) Standard Layout Dyslexic-friendly Layout

 

Annual Consumer Alliance Reports

Resources

 

SERN Highlights
May 2020

A Taste of eGNA: Now Expanding with Project ECHO

A Taste of eGNA: Now Expanding with Project ECHO

The Southeast Regional Genetics Network (SERN) is ready to launch its first Project ECHO platform for genetic disorders. Our first pilot project will focus on a multidisciplinary medical education approach focused on training genetic metabolic providers. We are currently recruiting for the Genetic Nutrition ECHO program which will launch in the fall of 2020. We hosted an ECHO methodology demonstration on Wednesday, April 29 where more than 300 genetic professionals, public health professionals, and other providers registered to learn more about Project ECHO. We had three case presenters from different institutions, active audience participation, and faculty experts who provided recommendations. If you are a genetic professional, currently seeing patients, we would like your help in completing the Genetic Nutrition ECHO Needs Assessment.

In addition, if you are interested in further educational opportunities, you will be directed to complete the Participant Interest Form after completing the needs assessment, which the ECHO team will use to enroll the first trainee cohort for the program and interested members will be provided with more details. For any further questions please contact egna@emory.edu.

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© 2006-2017   —   SOUTHEAST REGIONAL GENETICS NETWORK   —   A HRSA SUPPORTED PARTNERSHIP   —   GRANT #UH7MC30772