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

Medical Foods Survey

Volunteer Opportunities
 

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:
march-of-dimes.png

For more information contact the March of Dimes.

Affordable Care Act

The Affordable Care Act was passed by Congress and then signed into law by the President on March 23, 2010.

On June 28, 2012 the Supreme Court rendered a final decision to endorse the health care law.

The Affordable Care Act is a federal statute aimed at decreasing the number of uninsured Americans and reducing the overall costs of health care. Many of its provisions significantly impact children and youth with special health care needs, a population important to the purpose of the Southeast Regional NBS & Genetics Collaborative.

Please click on the links below for additional information.

Side-by-side comparison of major provisions and the implications for children and youth with special health care needs

Clickable state information

CHIP program

SERN is proud to be partnered with
Genetic Alliance

Last Modified: May 31, 2018

News
FDA permits marketing of first newborn screening system for detection of four, rare metabolic disorders
FDA permits marketing of first newborn screening system for detection of four, rare metabolic disorders FDA News Release The U.S. Food and Drug Administration today permitted marketing of the Seeker System for the screening of…

National PKU Awareness Day: December 3, 2017
National PKU Awareness Day: December 3, 2017The first National PKU Awareness Day, December 3, 2012, was established by a Congressional Resolution introduced by two U.S. Senators…

Limestone Life article highlights PKU (Athens, AL)
Limestone Life article highlights PKU (Athens, AL) Athens, AL based magazine Limestone Life features an article in their latest edition about Adam and Julie Tucker and their…

Patient and Family Events
<< << June 2018 >> >>
S M T W T F S

SERN Consumer Highlights
June 2018

Consumer Highlight: Melissa Perez

Consumer Highlight: Melissa Perez

Melissa Perez, a.k.a. Mom on a Mission, was introduced to the PKU community in 2005 with the addition of her second child, Mayer, who was diagnosed with PKU. Like most parents she spent the first couple of years learning what was needed in order to keep her son healthy. It wasn’t until the spring of 2008, when Florida State Legislators tried to decimate the budget for all of the Regional Genetic Treatment Centers that Melissa realized she would become an advocate for PKU and the metabolic community. Her family promptly jumped into action along with other Florida PKU families and friends and persuaded Legislators to reverse their original proposal to wipe out all necessary funding to treat Florida’s PKU patients and restore the budget to 100%. That was when Melissa decided to commit herself to the PKU world of advocacy. She has since kept up with State Legislation and has even taken her family to Washington DC to meet with members of Congress in hopes of gaining National support necessary to make positive change.    Melissa graduated with a degree in Marketing and Communications from Belmont Abbey College, Belmont North Carolina. She has had a fast and remarkable career in advertising and is now enjoying her time with her family, advocating when necessary, and involves herself with a local non profit in Tallahassee, Florida, were she and her family live. She and her husband Mark dedicate themselves to teaching their daughter Clara, and their son Mayer, that they are heroes by participating in the fight to make life better for others.       

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