Introducing the Advocacy Champions Network

Published October 20, 2020 | More than six months after state-level lockdowns began due to the COVID-19 pandemic, it feels as though advocacy organizations everywhere have adapted to the new, virtual forms of connection that are necessary in these times. Likewise, the PKD Foundation has spent the past few months preparing to take action for PKD once a new Congress is seated in January 2021.

As part of these efforts, we’re excited to announce the formation of the PKD Advocacy Champions Network (ACN)—an exclusive community of patients, family members, and clinicians dedicated to improving the lives of people living with PKD.

With guidelines varying between states and meeting rooms empty on Capitol Hill, we’re preparing our champions to advocate effectively for PKD research and funding from wherever they are. The Advocacy Champions Network will work together to develop their advocacy abilities and start the 117th Congress on the right foot to further our mission to end PKD. Champions from across the country will build on past success and the strength of the tens of thousands of community members who’ve dedicated their time and knowledge to take action.

Our priorities for the next Congress

  • Expand federal investment in PKD research and seek the establishment of the Polycystic Kidney Disease Research Program (PKDRP) under the Congressionally Directed Medical Research Program (CDMRP)
  • Support the inclusion of PKD-specific data collection through the CDC’s Chronic Kidney Disease (CKD) Surveillance Project, including incidence, prevalence, epidemiology, and health outcomes to support evidence-based practices and guidelines for treatment
  • Encourage and direct research initiatives at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) through the congressional appropriations report language


How you can get involved with PKD advocacy

The support of the entire PKD community is vital in furthering these causes and connecting with an expanding list of allies in Congress. To stay informed on what we’re working on and how you can get involved in PKD advocacy throughout the year, please head to our Advocacy page where you can:

  • Sign up for Advocacy Alerts to stay informed on the latest news. Our Advocacy Alerts provide you with all the information you need to stay current on the happenings in D.C. and a simple way to contact your legislators on important issues.
  • Learn more about our legislative priorities. Our legislative and regulatory priorities are guided by our vision to end PKD. Learning more about these critical issues will help you advocate and connect with those around you.
  • Download our advocacy tools and resources. Share your story. Tell your friends, family, and elected officials how they can help fight for PKD-related funding and regulation.


  1. bonnie esposito

    If not for PKD Foundation, who would advocate for us? Yes, most of us are monitored by doctors, but there is no cure and there is no treatment to control this disease at the early stages. Our hope lies in research with the PKD Foundation advocating for funds and, in turn, issuing grants to those researchers who are working toward the goals of viable treatments and a cure. Thank you for your work which gives hope to my family.

  2. Frances Silva

    Unfortunately, being monitored by our physicians, even by our Nephrologist’s isn’t enough for CKD, especially PKD. We need to advocate for ourselves because in the end, we are the only ones that know our bodies and the only ones that really care about our well-being. And, of course we need to advocate for each other to raise funds to help fignt to end PKD.



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  2. ACN Spotlight: Alix Piccirilli | PKD Foundation Blog - […] on April 5, 2022 | Launched in 2020, the Advocacy Champions Network (ACN) is an exclusive community of patients,…
  3. RideForPKD: Part I | PKD Foundation Blog - […] focus my energies on support for the PKD Foundation’s research program, as well as serving on the Advocacy Champions…
  4. ACN Spotlight: Lainie Esquivel | PKD Foundation Blog - […] on June 7, 2022 | In order to advocate for our community, we formed the Advocacy Champions Network (ACN).…

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