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).
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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.
Join the Advocacy Champions Network
Since 2019, the PKD Foundation’s Advocacy Champions Network (ACN) has united PKD patients, families, caregivers, and supporters nationwide to strengthen the voice of the PKD community at the federal level. These passionate advocates work year-round to build relationships with federal policymakers, ensuring they understand the complexities of PKD and urging them to advance critical policies that will shape the future of PKD care. The PKD Foundation equips ACN members with training and resources to build long-term relationships with legislators, advocate effectively for research funding and policy changes, and leverage media opportunities to elevate PKD awareness.
While the recruitment period for the Advocacy Champions Network begins each fall, we encourage you to share your interest in joining this exclusive group of advocates by completing this form.
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.
Encouraging Living Organ Donation
The Living Donor Protection Act (S. 1552) would support living organ donors by ensuring they don’t face increased premiums or denial for life, disability, or long-term care insurance due to their status as a donor. It would also include recovery from donation as a newly eligible condition to receive paid leave from work under the federal Family and Medical Leave Act (FMLA).
Additionally, the LDPA would require the HHS Secretary to review and update materials relating to living organ donation to educate the public on living organ donation and the new protections for donors.
The Living Organ Donor Tax Credit Act (H.R. 3698) would encourage prospective living organ donors by reimbursing up to $5,000 to help offset the financial costs of donation by creating a new, fully refundable tax credit.
With 11 kidney failure patients dying every day while waiting for a donor organ that will never come, patient organizations like the PKD Foundation recognize the time-sensitive need to take meaningful action to encourage donation, saving lives and money for our federal health systems by reducing the need for patients to undergo often costly and unpleasant dialysis treatments.
Learn more about the PKD Foundation’s support for the Living Organ Donor Tax Credit Act
Use the PKD Foundation’s convenient, pre-drafted message to encourage your legislators to support these lifesaving, bipartisan bills!
For more information about how to raise your voice on behalf of the PKD Community, contact [email protected].
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