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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: http://sergg.org/…

2016 Annual Meeting for SERC/SERGG - July 14-16 in Ponte Vedra Beach, Florida
2016 Annual Meeting for SERC/SERGG - July 14-16 in Ponte Vedra Beach, FloridaThe next annual SERC/SERGG meeting will be held July 19-21 at the Sawgrass Marriott Hotel in Ponte Vedra Beach, Florida.  Register today on the SERGG website.* Call for Abstracts* Accommodations* Directions* Participant Registration…

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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
September 2016

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. 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 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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