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2015 SERC/SERGG Conference Launches
2015 SERC/SERGG Conference LaunchesWith record turnout, the 33rd Annual SERC/SERGG Conference starts today!…

A Dialogue: Addressing and Paying for Genetic Services in Integrated Delivery Systems
A Dialogue: Addressing and Paying for Genetic Services in Integrated Delivery Systems archived webinar is now available on NCC's YouTube page.   You may access the video directly here.Please note that this is an archived webinar. If you would like to submit a comment about genetic services, please contact nccgeneticcollaboratives@gmail.com.Find out…

A Dialogue: Addressing and Paying for Genetic Services Across Delivery Systems
A Dialogue: Addressing and Paying for Genetic Services Across Delivery SystemsSave the Date ! June 15, 2015 A Dialogue: Addressing and Paying for Genetic Services Across Delivery Systems Register HERE and learn more What?  Bringing together insurers, genetics providers, primary care providers, consumers, public health, and federal partners for a discussion about the genetic/genomic services needed, barriers to accessing those services, and solutions in…

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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
August 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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