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
October 2018

SERN Lunch and Learn Announcement Wed, October 24th 2018

SERN Lunch and Learn Announcement Wed, October 24th 2018

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.

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