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2015 Annual Meeting for SERC/SERGG - July 16-18 in Asheville, NC
2015 Annual Meeting for SERC/SERGG - July 16-18 in Asheville, NCThe next annual SERC/SERGG meeting will be held July 16-18 at Renaissance Asheville Hotel in Asheville, NC. More information available on the SERGG website: http://sergg.org/…

Home Visiting Program Update: New National and State Program Information Available
Home Visiting Program Update: New National and State Program Information AvailableDear Colleagues: We are pleased to inform you that an Issue Brief and State-by-State Data on the Maternal, Infant, and Early Childhood Home Visiting Program are now available on HRSA’s Home Visiting Program website.  We encourage you to share these new resources with your maternal and child health and early childhood colleagues…

Summary of the February SDACHDNC meeting
We recently met with other regional collaboratives and partners in newborn screening at the Secretary's Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (SDACHDNC). Last September, a condition review update of Mucopolysaccharidosis (MPS I), which was under consideration for addition to the RUSP, was presented by Alex Kemper…

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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
March 2015

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