Announcing the 2021 NPKUA Funded Research Awards >>>
The National PKU Alliance (NPKUA) is a vital voice for the PKU community. We work towards expanding PKU research and accelerating the timeline for a cure by investing in peer-reviewed and targeted research. We provide education and support to people living with PKU. We are the national voice for advocacy at the federal level - at the NIH, FDA and in the halls of Congress.
The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are all connected to PKU.
We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU.
One of the main reasons the NPKUA was formed was to create a national research program to drive more research for PKU and accelerate the timeline for a cure.
We provide you with resources for adults and families living with PKU to better manage their disorder on a daily basis with a broad spectrum of tools covering every aspect of life.
The NPKUA provides educational services for the full life spectrum; initial diagnosis, school age, teen and adult support, and maternal health.
Join us in our efforts to improve the lives of individuals with PKU and help us advocate on the local and national level.
Patient registries have been shown to help speed the development of better treatments and ultimately improve patient outcomes.
The PKU Patient Registry is a secure database that provides a way to collect information from many different people with PKU. The information can be entered into the database by completing several different online surveys that are filled out at your own pace one at a time.
These surveys are intended to gather information about many different aspects of PKU including details about diagnosis, diet, medication, developmental milestones, behavior, and other clinical symptoms. The information that is entered will remain private and will not be linked to your name or any other identifiers. You will have the ability to view what you have entered and update your information regularly.
Our Clinic Locator provides a comprehensive list of clinics throughout the United States. We provide you with clinic details including address, phone number, website, provider names, and if the clinic treats children and/or adults, or participates in clinical trials.
JOIN US FOR THE 2024 NPKUA CONFERENCE
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We are committed to providing you with accurate and up-to-date information to keep patients and families informed on the latest research, available treatment options, and other key issues important to the PKU community.
Find a PKU clinical trial that fits your needs.
Connect with trained mentors who are ready to inspire, support, and provide you with individualized assistance.
A guide to help new parents understand more about PKU, what to expect at different stages in life, and where to turn for support and help.