Summary:
Share Your Story to Improve PKU Care
Have you or a loved one been affected by phenylketonuria (PKU)? Your experience matters — and it can help change the future of care.
We’re inviting adults with PKU and caregivers of adults or children with PKU to participate in a 45 minute online interview as part of a patient experience study. This is not a clinical trial — it’s a research activity where your story and feedback will help shape better care, support programs, and future research priorities.
Why Join?
- Make a difference: Your voice will directly influence research, innovation, and support services for people living with PKU.
- Participate from home: Interviews are conducted virtually at a time that works for you.
- Get paid fairly and fast: Earn $90 USD for the 45 minute interview, with payment issued within 48 hours of completing the session.
Who We’re Looking For:
- Adults (18+) in the United States
- People living with PKU or caregivers of adults or children with PKU
- Comfortable sharing their experiences in English during a 45 minute virtual interview
About the Study Organizer
This study is run through Savvy Cooperative, a patient owned platform that treats patients and caregivers as partners in shaping better healthcare solutions.