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News and Events  
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 daughter who is diagnosed with PKU: Local Mom Works to Generate Support for Rare Disorder…

2017 Annual Meeting for SERC/SERGG - July 13-15 in Asheville, NC
2017 Annual Meeting for SERC/SERGG - July 13-15 in Asheville, NCThe next annual SERC/SERGG meeting will be held July 15-17, 2017 at Renaissance Asheville Hotel in Asheville, NC.More information available on the SERGG website:…

Adrenoleukodystrophy Symposium Talks (from NYMAC)
NYMAC and Wadsworth Center offer the following collection of videos on XALD, available using the links below:-----------------------------------------------------------Adrenoleukodystrophy Symposium TalksSource: Testing and History of Adrenoleukodystrophy - Ann Moser, BA (link is external)ALD Management and Treatment - Gerald Raymond, MD (link is external)Genetic Counseling Considerations of ALD Newborn Screening and Differential…

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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.
Resources for health care and public health professionals interested in newborn screening (NBS) & genetics.
2016 SERC/SERGG Anuual Meeting

Save the Date!
The 2016 SERC/SERGG meeting will be held July 14-16 at Sawgrass Marriott Hotel in Ponte Vedra Beach, Florida.

Featured Content
October 2016

Introducing the NBS Connect patient registry!

Introducing the NBS Connect patient registry!

NBS Connect 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. The registry was launched with NBS-PKU Connect for Phenylketonuria, then NBS-MSUD Connect for Maple Syrup Urine Disease. The next phase is now available with. NBS-TYR Connect for Tyrosinemia. Expansion of the registry will continue to include other disorders in the recommended uniform screening panel (RUSP), endorsed by the American College of Medical Genetics (ACMG)

We encourage patients affected with PKU, MSUD and Tyrosinemia to visit the website at , 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

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