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).
Sign Up for Advocacy Alerts
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.
For more information about how to raise your voice on behalf of the PKD Community, contact volunteers@pkdcure.org.
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