The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. Here you will find the information and tools you need for a recent diagnosis, returning to treatment, , cooking with PKU, finding a clinic, insurance coverage and more.

Find a Clinic

Select a state to view clinics located in that state.

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Recent Diagnosis

Each year, approximately 1 in 14,000 newborn babies are diagnosed with PKU.  While this new diagnosis can be scary and upsetting, the NPKUA wants to assure you that your baby can and will grow up to be a healthy individual that has every opportunity available to them in life. 

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Return to Treatment

A short booklet has been developed to help adults with PKU return to diet. This booklet, created by adults with PKU, will offer information and short simple notes to help adults on their journey.

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Adults with PKU

The PKU Adult Program is a new initiative of the National PKU Alliance (NPKUA) that provides information and support for adults living with PKU. Adults with PKU face many challenges. The program provides a one-stop resource for adults seeking to improve their quality of life.

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Maternal PKU Emergency Assistance Program

The goal of the Maternal PKU Emergency Program is to assist women with PKU who are currently pregnant and have no access to foods modified to be low in protein due to financial barriers and lack of insurance coverage. To be eligible for the emergency assistance program the patient must be under the care of a qualified health care professional practicing at a metabolic clinic in the USA and currently reside in the USA. The application must be filled out and submitted by a medical professional from the woman's clinic.

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Cooking & Food

Food is central to our life – not only for essential nourishment, but also an important part of how we celebrate holidays, honor family traditions and experience new regions and cultures.  This doesn’t change when you or a loved one has PKU.

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PKU Camps

Each year a number of state organizations and clinics host camps for children and families with PKU.  Camps are a wonderful way to connect with others in the community and forge new friendships.

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Insurance Coverage

Information coming soon!

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SSA Disability - Applying With PKU

Living with Phenylketonuria (PKU) can put a significant financial strain on a family, as they seek the best treatment, adhere to the strict diet, and take time away from work to care for their loved one. To address this, the Social Security Administration (SSA) provides financial assistance to qualifying individuals in the form of Social Security disabilities. Understanding the application process and eligibility requirements for these benefits with PKU will help you successfully file your claim.

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