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Join the NBS Connect Patient Registry: Registering PKU, MSUD and now Tyrosinemia!

For inborn errors of metabolism including amino acid disorders, fatty acid oxidation disorders, and organic acid disorders.
Click here to register now.

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September 2017 Recipe of the Month

Gear up for Fall and try this delicious Asian-Style Carrots and Zucchini dish that goes well with your favorie meal!
Register now to see the complete recipe or submit one of your own.

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Help us learn more

By completing your profile, your information will be utilized to move forward research and clinical trials that could lead to future treatments and cures.

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Explore the data

You can Explore the responses of other participants

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The Newborn Screening (NBS Connect) patient registry serves as an internet-based support network for parents, guardians, and individuals with inherited metabolic disorders (IMDs). NBS Connect captures and analyzes information related to IMDs 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 IMDs.

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.

For instant updates, follow us on  and

The Professional Portal is Here!

The patient registry is now available to qualified researchers and clinicians. The professional portal provides resources such as access to a qualitative de-identified database for future research, and care and treatment strategies used by NBS Connect participants. Help us promote the importance of registering on NBS Connect to your patients.Click here to register as a professional.

Join the Discussions

Start a topic of interest or join the discussions already in progress. The discussion forum is a great way to connect with other registered participants. Click here to get started.

A Health Resources and Services Administration (HRSA) supported partnership