Getting Started On Surveys - Registry Resources Available!

Need help getting started on your surveys? Would you like to learn more about the information that will be collected in the registry before you get started? Check out the NPKUA registry page where you will find many resources for your use. Print out a step by step guide to help you get started. Watch a video that shows how to navigate within the registry and provides an overview of each survey. Check out a written guide that provides information on each survey including the information that it will collect and about how long it takes to complete. Still have questions? No problem, contact the PKU Registry coordinator at


See what experts say about the PKU Patient Registry

“I urge everyone with PKU to join the PKU Registry. The Registry offers to be the first time that all of us - people with PKU and their families, doctors, dieticians, everyone - can really learn about PKU and how treatment is going so that better and easier ways of treating PKU can come along.” – Harvey Levy, MD, Boston Children’s 

Back To Care

PKU can affect how you think, feel and act. Have you or a loved one with PKU been:

  • Feeling foggy or confused?
  • Having trouble keeping a job?
  • Experiencing strained relationships?

It could be the PKU.

Back to Care is here to help! In case you missed it, the Back to care program provides resources and support to help you or a loved one return to care.

Visit to learn more!

Save the Date for the 2018 NPKUA Conference

Mark Your Calendars!  The fifth NPKUA Conference will be held on August 5-8, 2018 in Atlanta, GA.  The conference will bring together more than 600 PKU families, adults and professionals to learn about the latest in PKU research, new therapies and best practices in daily management.  

For more information click here


Press Release

Click here to read the full PKU Patient Regisitry press release.