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2017 Annual Meeting for SERC/SERGG - July 20-22 in Asheville, NC
2017 Annual Meeting for SERC/SERGG - July 20-22 in Asheville, NCThe next annual SERC/SERGG meeting will be held July 20-22, 2017 at Renaissance Asheville Hotel in Asheville, NC.More information available on the SERGG website: http://sergg.org/…

Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey Participation
Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey ParticipationResearch OpportunityResearchers with SERC Medical Home & Transitioning Workgroup and SERC Consumer Alliance are are recruiting individuals ages 25-35 (and/or their parent or caregiver) who has successfully completed the healthcare transitioning process from pediatric to adult care. This is the first study of its kind using a Delphi survey technique…

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…

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Find disorder specific information as well as other resources for patients and families.
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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
December 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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