PKD Advocacy Action Center
Now more than ever, it is critical for patients to advocate on behalf of themselves, families, friends and loved ones with PKD. Share your voice and contact your elected officials about how they can help fight PKD.
What is Advocacy?
Advocacy is the foundation of democracy. It is an attempt to influence public policy, by a person or a group, in a way that brings about legislative action or change.
Members of Congress look to their constituents to bring important information to their attention. As someone with PKD, or a loved one or parent, you know more about PKD than anyone else.
Why is it important?
We encourage people with PKD and their families to meet with their local congressional representatives because just one personal story and one relationship can make a significant difference. Additionally, members of Congress want and need to hear from you.
"As a senator, I was always happy to hear from people from my home state. I received many requests for consideration, and hearing from people helped me set priorities. They informed me about what mattered to Utah – the state that I represented. It's critical for people in the PKD community to vocalize why PKD-related legislation is important in their states. The efforts people put into advocacy truly does have an impact."
– Former Sen. Robert Bennett (R-Utah) and PKD Foundation Board of Trustees member