SERN | Southeast NBS & Genetics Regional Collaborative

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Patients and Families (ver2)

The Southeast Newborn Screening & Genetics Regional Collaborative (SERC) 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:

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: Jul 2, 2013

News
Moms and future moms with rare inherited disorder aim for healthy babies
Moms and future moms with rare inherited disorder aim for healthy babiesMoms and future moms prepare for healthy babies

Tyrosinemia Type I: Making Connections Count - Meeting Agenda
Tyrosinemia Type I: Making Connections Count - Meeting AgendaThe Tyrosinemia Type I: Making Connections Count Meeting will be held in Atlanta, GA from May 25th-May 26th, 2017.The meeting…

Meeting Announcement: Advisory Committee on Heritable Disorders in Newborns and Children - May 11-12, 2017
Meeting Announcement:  Advisory Committee on Heritable Disorders in Newborns and Children - May 11-12, 2017Announcement: The next meeting for the Advisory Committee on Heritable Disorders in Newborns and Children will be held in-person and…

Patient and Family Events
<< << September 2017 >> >>
S M T W T F S

SERN Consumer Highlights
September 2017

Moms and future moms with rare inherited disorder aim for healthy babies

Moms and future moms with rare inherited disorder aim for healthy babies

"Pregnant women with PKU face special challenges like the threat of having a child with developmental delays even if the baby doesn't have PKU. Maternal PKU refers to any number of fetal abnormalities that result from an expecting mother with PKU who has excessive Phe levels in her blood. So even though a woman with PKU may not have symptoms herself, because she's adhered to a restrictive diet throughout her youth, her baby could still face devastating consequences if she lapses during pregnancy."

Full article and video here: http://news.emory.edu/stories/2017/08/video_maternal_pku/campus.html

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