Mission
NBS Connect will serve as an internet-based support network for parents, guardians and individuals with inborn errors of metabolism. NBS Connect will capture and analyze information related to inborn errors of metabolism in an effort to assess gaps in service, access to care and to develop best standards of practice for clinical management and connect families to research opportunities. NBS Connect strives to improve the quality of care of individuals with inborn errors of metabolism (IEMs).
Getting Involved
Registering with NBS Connect and completing a Profile connects you to the latest news and information about inborn errors of metabolism and current clinical trials/research studies and allows you to learn more about the community. Registering also gives you access to information about care and treatment; genetic testing and nutritional services and enables us to tell you about upcoming research studies for which you may qualify.
A Health Resources and Services Administration (HRSA) SUPPORTED PARTNERSHIP
GRANT #H46MC24090 |