2013 SERC/SERGG Anuual Meeting
The next annual SERC/SERGG meeting will be held July 18-20 at the Renaissance Asheville Hotel in Asheville, NC.
* More information coming soon!
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, followed by other inborn errors of metabolism.
We encourage patients affected with PKU 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 coordinator Yetsa Adadevoh at firstname.lastname@example.org.