08/06/2026
📢 Adults with PKU: Your Voice Matters More Than Ever!
We already have the first responses coming in from around the world—thank you! 💙 But to create meaningful change, we need many more adults living with Phenylketonuria (PKU) to take part.
This survey is not just another questionnaire.
It is an opportunity for YOU to turn your personal experience into scientific evidence that can help improve PKU care, increase awareness of the real challenges adults face, and strengthen discussions about access to treatments and reimbursement worldwide.
Every response helps build a stronger case. Every story counts. Every voice matters.
Whether your PKU journey has been easy, difficult, or somewhere in between, your experience deserves to be heard.
🌍 We are looking for adults with PKU from ALL countries.
📝 Complete the survey here:
pku.at/vewzjt
Please take a few minutes to participate and share this post with other adults living with PKU. The more voices we collect, the stronger the evidence becomes—and the greater our chance to create real change for the global PKU community.
Together, we can shape the future of adult PKU care.
