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News and Events  
Fatty Acid Oxidation Disorders Family Get-Together
As part of a HRSA grant initiative, the Southeast Newborn Screening & Genetics Regional Collaborative (SERC) from the Maternal and Child Health Bureau supports activities organized by members of the consumer alliance group. In collaboration with a consumer from the SERC consumer alliance, SERC is pleased to announce an upcoming…

Lunch and Learn: The Telegenetics Experience - January 28, 2015 RSVP today
Please join us for a live presentation via internet available to a limited number of sites or in-person presentation  on Wednesday, January 28th at 12:30 pm in the North Decatur Conference Room for our SERC Lunch and Learn Series. A flyer is attached for your review.   Our speaker will be:   David Flannery, M.D., FACMG Medical Director…

"Ley Lola" or "Lola's Law"
"Ley Lola" or "Lola's Law"  "Ley Lola" or "Lola's Law" was signed into law by the governor of Puerto Rico on November 20, 2014.     13-year-old Lola had open heart surgery at Mayo clinic last November to repair her heart…she had a cone repair, right ventricle reduction and plication, Glenn bypass and a large ASD closed.…

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Southeast Regional NBS & Genetics Collaborative States Click to view Louisiana Homepage Click to view Mississippi Homepage Click to view Tennessee Contacts Click to view Alabama Contacts Click to view North Carolina Homepage Click to view South Carolina Homepage Click to view Georgia Homepage Click to view Florida Homepage Click to view Puerto Rico Homepage Click to view Virgin Islands Homepage
Patients & Families
Find disorder specific information as well as other resources for patients and families.
Professionals
Resources for health care and public health professionals interested in newborn screening (NBS) & genetics.
2015 SERC/SERGG Anuual Meeting

Save the Date!
The 2015 SERC/SERGG meeting will be held July 16-18, 2015 at Renaissance Asheville Hotel in Asheville, NC.

Featured Content
December 2014

Introducing the NBS Connect patient registry!

Introducing the NBS Connect patient registry!

NBS Connect http://nbsconnect.org has been designed as a resource for those affected by certain disorders included in the newborn screening (NBS) panel. Extensive development of the registry will occur via a phased approach using Phenylketonuria (PKU) as the model disorder. We have recently launched the Maple Syrup Urine Disease (MSUD) patient profile, which will be followed by other disorders in the NBS panel recommended by the American College of Medical Genetics ACMG).

We encourage patients affected with PKU and MSUD to visit the website at www.nbsconnect.org , register and complete their participant profiles. Participants will have access to disorder specific education materials, information on the latest research and clinical trials, recipes, interactive health tracking systems, “Ask an Expert” tools and more. We hope you will take advantage of the resources provided which will empower you to make more informed healthcare decisions.

This registry will be an asset both for forming connections between consumers and for building a qualitative database for future research.

If you have any questions, please email the project manager Yetsa Osara at coordinator@nbsconnect.org.

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© 2006, 2007, 2009, 2010, 2011, 2012, 2013   —   SOUTHEAST NBS & GENETICS COLLABORATIVE   —   A HRSA SUPPORTED PARTNERSHIP   —   GRANT #H46MC24090