Advocacy

• 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).

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.

The Living Donor Protection Act (H.R. XXXX/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.

Ensuring that potential living donors aren't discouraged due to potential discrimination is essential in efforts to reduce the kidney transplant waitlist. Join the PKD Foundation and other advocates — Ask your legislators to cosponsor the federal Living Donor Protection Act and support its passage in Congress!