June 2026 Newsletter
New Study Informs ADPKD Pregnancy Conversations
Researchers at the University of Colorado analyzed data from a cohort of 455 women with autosomal dominant PKD to examine the relationship between pregnancy history, kidney function, and kidney size.
Their findings, published in the Journal of the American Society of Nephrology, showed that pregnancy was not associated with faster PKD progression, larger kidneys, or a more rapid decline in kidney function.
In a follow-up article with Healio, lead author Dr. Lapierre-Nguyen said, "We hope clinicians will use these findings to provide more informed, evidence-based counseling to young women with ADPKD, particularly during key reproductive decision-making years."
From Advocacy to Action
The PKD community reached a historic milestone earlier this month with the introduction of the PKD Cures Act, the first federal legislation dedicated specifically to polycystic kidney disease.
If enacted, this bipartisan bill would strengthen and expand NIH-led PKD research, establish a national roadmap for future research priorities, and accelerate the development of new treatments that could ultimately lead to a cure for the more than 500,000 Americans living with PKD.
This landmark legislation reflects years of dedicated advocacy by patients, families, researchers, clinicians, and organizations working together to elevate PKD as a national research priority.
We extend heartfelt gratitude to Representatives Debbie Wasserman Schultz, Carol Miller, Emanuel Cleaver, and Don Bacon, the PKD Foundation, and the numerous advocates whose leadership and persistence made this pivotal moment possible.
Celebrating Hazel and the Payne Family
American Kidney Fund recently featured Marcus and Callie Payne's inspiring journey to building their family through IVF and preimplantation genetic testing with support from PKD-Free Alliance.
Their story highlights the courage, perseverance, and hope that made it possible to welcome their daughter, Hazel, free from PKD.
The article was published on Hazel's first birthday, making the occasion even more special. From all of us at PKD-Free Alliance, happy (belated) first birthday, Hazel!
Research Roundup
Researchers at the University of Southern California have created the most advanced lab-grown kidney organoids to date, mimicking key structural and biological features of the human kidney. These highly authentic kidney models will help scientists better understand how kidney diseases develop, including cyst formation in PKD, and provide a powerful platform for testing new therapies. In the long term, this research could also contribute to efforts to grow replacement kidneys for transplantation.
Researchers at Mayo Clinic found that the drug probenecid, a medication first developed in the 1940s that is now used to treat gout, may help slow cyst growth in polycystic kidney disease by targeting a newly discovered pathway the kidneys use to regulate water balance. This pathway works differently from current treatments, suggesting a potential new approach to managing PKD. If confirmed in future studies, these findings could lead to treatments that are more effective and have fewer side effects than current options.
A study published in Clinical Kidney Journal followed 410 people with autosomal dominant PKD enrolled in the long-term HOPE-PKD research cohort in South Korea to examine whether kidney stones are linked to disease progression. Researchers found that people with PKD who had kidney stones experienced an earlier and faster decline in kidney function than those without kidney stones. The findings suggest that kidney stones are associated with more rapid PKD progression and highlight the importance of monitoring for and managing kidney stones as part of overall kidney care.
Follow PKD-Free Alliance's X account to be the first to know about scientific announcements and newly published research. Note: You may need to sign in to your X account to see our posts.
