- COVID-19 Updated Resources for Southeast Region
- Get the latest public health information from CDC: https://www.coronavirus.gov
- Get the latest research from NIH: https://www.nih.gov/coronavirus
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.
| 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 |
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
- SERC Consumer Alliance Workgroup Report - July 18, 2014
- SERC Consumer Alliance Workgroup Report - July 19, 2013
- SERC Consumer Alliance Workgroup Report - August 28, 2012
Resources
- Genetic Alliance Update
- Federal Medical Foods Advocacy
- Medical Home Presentation
- Medical Foods Legislation in Georgia
2020 Annual Meeting for SERN/SERGG - July 16-18 in Asheville, NC
The next annual SERN/SERGG meeting will be held July 16-18, 2020 at Renaissance Asheville Hotel in Asheville, NC.
More information available on the SERGG website: http://sergg.org/
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This website is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $600,000.00 with 0 percent financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov.
© 2006-2017 — SOUTHEAST REGIONAL GENETICS NETWORK — A HRSA SUPPORTED PARTNERSHIP — GRANT #UH7MC30772 |