Advocacy

The PKD Foundation works tirelessly to make lawmakers aware of the urgent needs of PKD patients, but real change happens when they hear directly from you—patients, families, caregivers, and constituents.

By engaging with your federal officials, you help drive the decisions that shape research investments, access to care, and treatment breakthroughs. It’s more important than ever to raise your voice on behalf of our community.

That’s why the PKD Foundation has set clear legislative priorities for the 119th Congress and created opportunities for you to advocate. The future of PKD research, treatment, and care depends on us!

119th Congress Legislative Priorities

Federal investment in PKD research, including through the Department of Defense’s Peer Review Medical Research Program (PRMRP), and other federal funding mechanisms.
Passage of the legislation that will remove disincentives to living organ donation and encourage individuals to give the generous gift of life as living organ donors.
Legislation that would establish PKD research and surveillance programs through federal and regulatory agencies such as the Department of Health and Human Services (HHS), Centers for Disease Control and Prevention (CDC), and/or the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

Lawmakers need to hear directly from their constituents. Sign up for our Advocacy Alerts to stay informed about key legislative efforts and urgent opportunities to raise your voice in support of PKD patients.

Advocacy Alert - Protect PKD Research

Protect PKD Research: Urge Congress to Restore CDMRP Funding

The Department of Defense’s Congressionally Directed Research Program (CDMRP) is one of the few sources of federal funding dedicated to high-impact, innovative research for diseases like PKD. With no cure and limited treatment options, the more than 600,000 Americans living with PKD rely on the breakthroughs this program makes possible.

The PKD Foundation is proud to be a member of the Defense Health Research Consortium (DHRC), a coalition of patient advocacy organizations, medical provider groups, veterans’ organizations, and research advocacy groups dedicated to protecting and preserving funding for the CDMRP.

Unfortunately, in March 2025, CDMRP was cut by 57%, putting promising PKD research at risk. A recently introduced bill, the Medical Research for Our Troops Act (H.R. 3906), would fully restore this funding and ensure continued investment in life-saving science.

Send a message to your Representative now urging them to cosponsor H.R. 3906 and stand up for the PKD community and all those depending on medical innovation.