PKD Foundation

We are at a pivotal moment for PKD research.

Your donation during National Kidney Month will help keep life-changing research moving forward. And thanks to a generous donor, your gift will be matched, up to $15,000, making 2x the impact.

Give Today ➡️ pkdcure.org/NKM2026

On this Rare Disease Day, we’re proud to share the most up-to-date information for ARPKD patients and families. Our newly updated Patient Handbook includes comprehensive information on ARPKD and congenital hepatic fibrosis (CHF). Download your copy today: pkdcure.org/for-patients...

Gillibrand, Cotton, Nadler, Bacon Introduce Bipartisan, Bicameral Legislation To Protect Organ Donors - Kirsten Gillibrand | U.S. Senator for New York Today, U.S. Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR) introduced legislation to protect the rights of living organ donors. The Living Donor Protection Act would ensure living donors do ...

Learn more about the Living Donor Protection Act here: www.gillibrand.senate.gov/news/press/r...

The Living Donor Protection Act (LDPA) has moved forward! Thank you to the Senate HELP Committee for voting to advance this important legislation. We look forward to its consideration and passage by the full Senate in the coming months.

Listen to our newest episode of PKD Chronicles, where we explore everyday lifestyle tips designed to help those living with PKD with Dr. Fouad Chebib and Dr. Moain Abu Dabrh.

🎧 Listen Now pkdcure.org/PKDChroniclesS1Ep10

Registration is now open for in-person attendees at PKDCON 2026! 🎉

This two-day event brings the PKD community together for education, empowerment, and hope.

👉 go.pkdcure.org/PKDCON26Social

Can’t attend in-person? Virtual registration opens April 1st.

Why the Rare Pediatric Disease Priority Review Voucher Matters for the PKD Community Learn about the Rare Pediatric Disease Priority Review Voucher program's critical role in improving treatments for children, including ARPKD.

In December, we urged Congress to act to preserve this critical program and the hope it brings to families. We’re grateful to see the patient community’s advocacy translate into action: pkdcure.org/resources/wh...

The pediatric priority review voucher program is a powerful tool that helps incentivize researchers and companies to pursue treatments for rare pediatric conditions—especially those that currently have no approved therapies, like pediatric PKD.

We were pleased to see Congress pass, and the President sign into law, the bipartisan Mikaela Naylon Give Kids a Chance Act earlier this week, reauthorizing the Pediatric Priority Review Voucher Program.

While this research is still at an early stage, these findings suggest that one day it may be possible to treat PKD by correcting the underlying genetic cause with a single gene-therapy injection. We’re encouraged by this progress and will continue sharing updates as the research progresses.

In vivo base editing rescues ADPKD in a humanized mouse model Autosomal dominant polycystic kidney disease (ADPKD) is a genetic kidney disease, caused by mutations of the PKD1 and PKD2 genes, characterized by the development of renal cysts and extrarenal complications, such as cardiac hypertrophy. Recently, a ...

➡️ In the second study, base-editing machinery was delivered to the kidney where it reduced kidney cysts. pmc.ncbi.nlm.nih.gov/articles/PMC...

In vivo base editing reduces liver cysts in autosomal dominant polycystic kidney disease - PubMed Autosomal dominant polycystic kidney disease (ADPKD) is the most prevalent genetic kidney disorder, affecting over 10 million individuals worldwide. Cystic expansion typically progresses to kidney failure and also involves the liver with limited treatment options. Pathogenic variants in PKD1 or PKD2 …

➡️ In the first study, the base-editing machinery was delivered to the liver where it reduced liver cysts caused by the PKD mutation. pubmed.ncbi.nlm.nih.gov/40842155/

This technology can correct disease-causing genetic mutations by changing them back to the normal version of the gene. In two recent studies, researchers tested this approach in mouse models that were designed to carry the same mutations seen in some people with ADPKD.

Have you heard of CRISPR base-editing? This emerging tool is currently being used by scientists to advance potential treatments for autosomal dominant polycystic kidney disease (ADPKD). 🧵⬇️

Taking place June 12–13, 2026, in Chicago, PKDCON offers a unique opportunity to engage directly with the PKD community, share how your work is making a difference, and be inspired by the patient stories behind the science.

Submission deadline is February 16, 2026.

PKD researchers, we invite you to submit your research abstract for the poster session at the 2026 PKD Connect Conference (PKDCON)—the PKD Foundation’s annual conference that brings together patients, families, clinicians, and researchers.

pkdfoundation.jotform.com/253503450999...

Check out this free resource for PKD patients and families 👇

The Mayo Clinic PKD Resource Center offers articles and videos on diagnosis, genetics, lifestyle management, treatment options, and more. Find reliable and expert-led PKD information at mcpress.mayoclinic.org/polycystic-k...

Autosomal Dominant Polycystic Kidney Disease affects more than just the kidneys. In this webinar, organized by the @pkdfoundation.bsky.social, the systemic impact of the disease is explored, including its effects on the heart, liver, bones, and metabolic health 📹 www.youtube.com/watch?v=biwC...

You can join advocates from across the country as part of our Virtual Advocacy Day on Thursday, March 5. Together, we’ll make a difference for the PKD community by advocating for federal policies that advance PKD research and care.

Registration is now open: pkdcure.org/2026AdvocacyDay

Regular exercise is a must when you have PKD. However, winter temperatures, ice, and snow can make outdoor workouts hazardous. We asked Lauren Schaffer, a physical therapist at the University of Kansas Health System for advice.

Read more on today's blog.
pkdcure.org/resources/5-...

PKD Chronicles: Nourishing Families: A Dive into Nutrition and Cooking  Download Transcript In this episode, we journey into the world of nutrition and cooking, exploring what it truly means to nourish our families well. We begin by unpacking general ...

Diet and nutrition play a key role in managing PKD. Don’t miss our newest episode of PKD Chronicles, where we dive into general nutrition guidelines for PKD patients and share ideas for creating nourishing, flavorful meals with Brooke Nichols, MS, RDN.

Listen now: pkdcure.org/PKDChroniclesS1Ep9

The latest edition of PKD News from the PKD Foundation is about to hit inboxes. Make sure you are on our email list to stay up to date on PKD research breakthroughs, community stories, helpful resources, and important updates.

Subscribe today. 📥 go.pkdcure.org/pkdnews

Innovation like this could dramatically improve the quality of life for kidney transplant patients.

Learn more at newsroom.ucla.edu/releases/kid...

"This approach is still in the experimental stage, but it points toward meaningful progress. As someone who cares for many patients living with PKD, I’m very excited by this work and optimistic about where continued research may lead."

"The possibility that some patients might one day need fewer immunosuppressive medications, or potentially come off them entirely, is something we have long wished for."

PKD Foundation Center of Excellence Director Heedok Han, M.D. (Columbia University Irving Medical Center) shares what this could mean for patients.

It’s Giving Tuesday! Choose the PKD Foundation today to expand access to expert care, help patients get diagnosed earlier, manage symptoms better, and ultimately spend more time with the people they love.

No one should miss out on life because of PKD. Give today. go.pkdcure.org/GT25Social

With your support, we can create a future with fewer missed milestones and more meaningful memories for families affected by PKD.

go.pkdcure.org/GT25Social

Giving Tuesday is tomorrow. Are you ready?

❣️ Donate to double the impact of your gift for people with PKD
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🛠️ Inspire your loved ones to join us December 2

This briefing is an important step toward restoring these critical investments.

Join us by contacting your lawmakers today to advocate for PKD research! pkdcure.org/RestoreCDMRP