SERN | Southeast NBS & Genetics Regional Collaborative

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Resources for Patients and Families

The Southeast Regional Genetics Network (SERN) is a federally-funded initiative dedicated to improving the health and quality of life of individuals with heritable disorders.  Providing patients and families with up-to-date, relevant information about newborn screening (NBS) and genetics is an important goal of SERC.  Below are links to information and resources specific to patients with genetic disorders and their families. 


Consumer Alliance
Workgroup

Consumer Alliance
Mailing List

Genetic Disorders

News and Events
 

Centers Directory

Personnel Directory

NBS Connect

Volunteer Opportunities
 

SERN/SERGG Annual Meeting
 
A Parent's Guide to Newborn Screening

In a gentle, warm and supportive context, A Parent's Guide to Newborn Screening explains what newborn screening is, its purpose, the test procedure, and what parents need to do if retesting is necessary:

A Parents Guide to Newborn Screening

Una guoa para pacientes sobre las pruebas
de diagnostico para los recion nacidos

Brought to you by:
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For more information contact the March of Dimes.

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Consumer Alliance Workgroup

Read about and become involved with activities led by the Consumer Alliance Workgroup.

 

Emergency Preparedness ToolkitThe 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/

SERN is proud to be partnered with
Genetic Alliance

Last Modified: Jun 27, 2018

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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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.

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