Sharing your experience with PKU helps raise awareness, build understanding, and drive change. Whether you’re talking with legislators, educating your community, supporting another family or speaking with healthcare providers, schools or employers, your voice is a powerful tool. There are many ways to advocate at the personal, local, state and federal levels — join us as we continue working together to advance the issues that matter most to the PKU community!

Advocate with Us

The NPKUA Advocacy Committee focuses on a range of priorities, including legislative advocacy to improve access to medical food and formula and other policies that impact the PKU community, community-level awareness efforts and adult care. Through the leadership and dedication of volunteer advocates, the committee works to advance change at the personal, community, state and federal levels to improve the lives of people affected by PKU.

Medical Foods and Formulas Access Act

PKU is diagnosed through newborn screening, and although almost all babies in the U.S. have been screened at birth for over 50 years, coverage for medically necessary treatment is often denied and unreliable. We have been working to help pass federal legislation to address coverage of formula and low-protein modified foods since 2009.

The Medical Foods and Formulas Access Act (MFFAA) would require coverage of medically necessary foods and formulas as treatment under Medicare, Medicaid, Children’s Health Insurance Program (CHIP) and the Federal Employees Health Benefits Program (FEHBP). We believe that the passage of this act would be an important step towards medical nutrition equity for all.

Learn more about the MFFAA at Patients & Providers for Medical Nutrition Equity. You can help by contacting your legislator and sharing your story.

Local media

Share your PKU rare disease story with your local media. Local news stations, radio programs, and newspapers are more likely to feature stories about people in the community. And your state and federal policy makers are tapped into local news. Be sure to share your story with NPKUA so we can feature it on our social media.

Visit our media toolkit for step-by-step guidance.

To learn more about our advocacy efforts or to become involved with the NPKUA Advocacy Committee, contact us at [email protected].