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
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Genetic Disorders

News and Events
 

Centers Directory

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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
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…

New RTI International Program to Offer Free Elective Genetic Testing for North Carolina Newborns
New RTI International Program to Offer Free Elective Genetic Testing for North Carolina Newborns RESEARCH TRIANGLE PARK, NC - A new program offering free elective genetic testing for newborns, developed at RTI International, will…

Patient and Family Events
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SERN Consumer Highlights
August 2017

Emory Metabolic Camp - June 25-30, 2012

Emory Metabolic Camp - June 25-30, 2012

 

About the Camp:

Our model, research-based Metabolic Camp offers a unique opportunity for young women ages 12 and up with PKU or MSUD to live and learn together in a supportive camp environment.
 
Goals of the camp:
  1. To teach the importance of nutrition and help the campers develop diet self-management skills.
  2. To review the treatment recommendations of PKU and MSUD prior to and during pregnancy.
  3. To create a place to share experiences and make new friends with other young women who have PKU or MSUD.
  4. To research the impact of the above interventions on the transition to adulthood, pregnancy, quality of life, and overall health outcomes.
The camp program focuses on building social support through a variety of activities:
 
Nutrition Education
Cooking Classes
Discussion Groups
Cooperative Sports
Local Field Trips
And More!
 
The camp will be conducted for five consecutive days. Meals will be provided and supplemented with low protein foods. Registered dietitians will be present to assist at all meals.
 

For more information 

 

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