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).

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.

Living Donor Protection Act

The PKD Foundation has long championed policies that encourage living organ
donation and remove barriers for those who choose to give the extraordinary gift
of life. Individuals who donate often do so at significant personal cost, and far too
often, without the federal protections they deserve.

Despite the generosity of living donors, federal law still does not guarantee job
security during recovery, nor does it shield donors from insurance discrimination.
1 in 4 living donors report being denied or charged higher premiums for life
insurance after donation —a barrier that discourages the very acts of generosity
that save lives.

For PKD patients specifically, living donation can be both the most viable path to
transplant and the most complicated, given the hereditary nature of the disease.

The PKD Foundation strongly supports the federal Living Donor Protection Act
(H.R. 4583 & 4582 / S. 1552), which would address these barriers by:

1. Prohibiting discrimination in life, disability, and long-term care insurance
coverage for living donors
2. Guaranteeing job-protected leave under the Family and Medical Leave Act
(FMLA) to allow donors time to recover from surgery
3. Requiring the Department of Health and Human Services (HHS) to update
federal guidance ensuring consistent implementation of these protections
nationwide

In February 2026, the Living Donor Protection Act passed out of the Senate HELP
Committee, the first time the bill has ever advanced through a congressional
committee.

This historic milestone brings us closer than ever to making these protections the
law of the land. The PKD Foundation urges Congress to build on this momentum
and send the Living Donor Protection Act to the President's desk.