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!
The PKD Cures Act is the first-ever federal legislation focused specifically on advancing research and improving outcomes for people living with polycystic kidney disease (PKD).
The bipartisan bill would strengthen the federal government's commitment to PKD by expanding research efforts, improving coordination across federal agencies and the research community, and accelerating the development of better treatments and, ultimately, a cure.
Learn more about the PKD Cures Act and what it means for the PKD
community.
The PKD Foundation’s current federal advocacy priorities include:
- Passage of the bipartisan PKD Cures Act
- 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.
Since 2019, the PKD Foundation’s Advocacy Champions Network (ACN) has brought together people living with PKD, family members, caregivers, and supporters across the country to strengthen the voice of the PKD community on Capitol Hill.
ACN members are dedicated volunteers who build relationships with members of Congress and their staff, share their personal experiences with PKD, and advocate for policies that improve the lives of people and families affected by the disease. Throughout the year, Advocacy Champions help lawmakers understand the impact of PKD and the importance of federal research funding, access to care, and policies that support the PKD community.
The PKD Foundation provides Advocacy Champions with training, resources, and ongoing support to help them become confident and effective advocates. By building long-term relationships with policymakers and sharing the voices and experiences of the PKD community, ACN members help ensure that PKD remains a priority for federal decision-makers.
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.
For more information about how to raise your voice on behalf of the PKD Community, contact education@pkdcure.org.
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