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Consumer Alliance
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…
June 27th, 2018

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
September 2018

2018 Annual Meeting for SERN/SERGG - July 19-21 in Asheville, NC

2018 Annual Meeting for SERN/SERGG - July 19-21 in Asheville, NC

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/

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