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2014 Annual Meeting for SERC/SERGG - July 17-19 in Ponte Vedra Beach, FL
2014 Annual Meeting for SERC/SERGG - July 17-19 in Ponte Vedra Beach, FLThe next annual SERC/SERGG meeting will be held July 17-19 at Sawgrass Marriott Hotel in Ponte Vedra Beach, Florida. More information available on the SERGG website: http://sergg.org/…

NCC Collaborator: Family Health History Remains a Priority for the NCC/RC System and Its National Partners
NCC Collaborator: Family Health History Remains a Priority for the NCC/RC System and Its National PartnersThe new NCC Collaborator for May 2014 entitled “Family Health History Remains a Priority for the NCC/RC System and Its National Partners” features the article “SERC Looks at the Use of a Prenatal Screening Tool to Improve Family Health History Collection” which was submitted by Alana Aisthorpe, Project Coordinator, Department of…

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)…

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2014 SERC/SERGG Anuual Meeting

Save the Date!
The 2014 SERC/SERGG meeting will be held July 17-19 at Sawgrass Marriott Hotel in Ponte Vedra Beach, FL.

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July 2014

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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