Our Community Engagement Meets You Where You Are

Online Support Is Essential for Our Rare Community

Before the internet, the National PKU Newsletter kept us connected and informed. Today, we have Facebook for real-time consultation and support.

Cook for Love - Low Protein Cooking for the PKU Community

Brenda Winiarski has cultivated one of the largest and most supportive Facebook groups dedicated to cooking (and enjoying!) the low-protein diet. And it's never been just for PKU, with one of the most diverse groups in terms of metabolic conditions and international members.

Visit the group

flok together

Originally founded as a support forum for HowMuchPhe.org, the flok support group is a resource for all those with an inherited condition of protein metabolism, their caregivers, and their clinicians. From food, to exercise, to treatment options, the group members guide each other through the challenges (and joys) of managing these conditions.

Visit flok on Facebook

The Guthrie-Koch Scholarship Program

Since 1997, we've provided grants to support higher education to more than 120 young adults with PKU, honoring the legacy of founding Board Member Dr. Robert Guthrie and fellow Newborn Screening Pioneer Dr. Richard Koch. Scholarship applications will be accepted from December 15, 2023-March 15, 2024 for the 2024-2025 academic year; with our transition to flok, the scholarship is open to a wider group of applicants.

Advocacy: Rallying for Our Collective Health

flok advocates for medical nutrition coverage for low-protein foods and formula as leader in the Patients and Providers for Medical Nutrition Equity Coalition.

During the formula crisis, we supported the community, coordinated communication between industry and those desperate for formula, rallied media attention for the issue, and our leader testified to Congress on behalf of the metabolic community.

Learn more about Medical Nutrition Equity

The Lighter Side of Life With a Metabolic Disorder

Filmmaker Kurt Sensenbrenner has a unique perspective on life with PKU and highlights the joy and humor that co-exist with the challenges. flok is proud to support the production and distribution of The Low-Phe Life.

Real-life stories

Every episode features a true story about life with a metabolic condition, told by those who lived it.

Not Just PKU

If you've ever tasted metabolic formula, weighed a food, or done a blood test, you'll see yourself in these stories!

Visit the Web site for episodes, events and more!