According to Health Resources and Services Administration, over 2,000 children in the U.S. are currently waiting for a life-saving organ transplant. “Kidney Transplantation in Children,” a 2022 PKDCON session helps explain what this journey can look like for PKD families. youtu.be/59kBU9smVF0

Volunteer Appreciation Week starts today! 💙 The passion, dedication, and commitment of our volunteers continue to move us closer to a future free from PKD. Thank you for all you do.

In our latest podcast episode, Heedeok Han, MD, explores the benefits of pre-emptive kidney transplants, early referrals, and proactive care to help support better kidney health and quality of life. Listen now: pkdcure.org/PKDChronicle...

April is Minority Health Month and an important reminder that equitable care matters. Check out this article by Pranav Garimella, MBBS, MPH, FASN, and Clinic Director at the University of California, San Diego, a PKD Foundation Center of Excellence. www.consultantlive.com/view/rewriti...

At #ISNWCN, we spoke with Lilian Kaplan Prize winner Prof. Ron Gansevoort. “Be inspired. We are all clinicians. That's our basic task.” He encourages young nephrologists to pursue research while staying grounded in clinical care. 🎥 bit.ly/3PU8aN3 @pkdfoundation.bsky.social

Congratulations, Ron T. Gansevoort, professor of medicine and nephrologist at the University Medical Center Groningen in the Netherlands, on receiving the 2026 Lillian Jean Kaplan International Prize for Advancement in the Understanding of polycystic kidney disease.

Virtual registration is now open for PKDCON 2026! If you can’t join us in Chicago, you don’t have to miss out on all the valuable education. Planning to attend in person? Tickets are still available, but are expected to sell out this April. Register Today go.pkdcure.org/PKDCON26Social

We excited to join the global kidney community at the World Congress of Nephrology 2026, hosted by the International Society of Nephrology. We look forward to convening with researchers from around the world to share the latest advancements in kidney health, research, and education.

For more than a decade, patients, donors, and advocates have pushed for living organ donation reform. In an op-ed published in The Kansas City Star, our CEO shares why this moment matters and why Congress must pass the Living Donor Protection Act. ⬇️ www.kansascity.com/opinion/read...

⏰ Let us know you’re coming to tomorrow’s webinar! 📣 PKD Advocacy in Action: What it Means and How to Get Involved. ➡️ pkdcure.org/AdvocacyWebinar26

At PKDCON 2026, leading clinicians and researchers will present on topics that matter most to the PKD community, from the latest research advancements to practical guidance on managing the disease. Register today. ➡️ go.pkdcure.org/PKDCON26Social

Behind every breakthrough are dedicated scientists like Brittany Lasseigne, Ph.D. When she began collaborating with the PKD research community at the University of Alabama at Birmingham, she quickly recognized both the complexity of the disease and the opportunity to better understand it.

For World Kidney Day, we’re proud to spotlight the researchers advancing PKD science. Ron Perrone, M.D., has an extensive background in PKD research and currently serves as co-director of the PKD Outcomes Consortium (PKDOC), working in collaboration with us and the Critical Path Institute.

Today is World Kidney Day, a global opportunity to highlight the important role kidneys play in our overall health— something families living with polycystic kidney disease know all too well.

We are leaving Capitol Hill knowing this work matters.  With the recent progress on the Living Donor Protection Act, we’ve seen firsthand that advocacy creates change.  Thank you advocates for helping advance research, protect living donors, and support the PKD community. 💙

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...

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

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.

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). 🧵⬇️

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-...

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

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

Giving Tuesday is tomorrow. Are you ready? ❣️ Donate to double the impact of your gift for people with PKD 🔁 Share our stories and updates on social media 📣 Start your own Facebook fundraiser 🛠️ Inspire your loved ones to join us December 2

Today, Shandel Atoigue, a PKD Foundation Advocacy Champion, is speaking at a congressional staff briefing on the Congressionally Directed Medical Research Program (CDMRP). 🧵⬇️

Genetic testing is transforming how we understand and manage PKD. In our latest episode of PKD Chronicles, we’re talking with certified genetic counselor, Kayla Kolbert, about the science and significance of genetic testing for PKD patients. 🎧 Listen now go.pkdcure.org/Podcast7Social

🤝 #PKDInternational & @pkdfoundation.bsky.social: united for research and patients Founded in 1982, PKD Foundation is the only organization in the United States entirely dedicated to discovering treatments and a cure for polycystic kidney disease (PKD). 🔗 pkdcure.org/who-we-are

Earlier this year, the FDA approved the first clinical trials using genetically modified pig kidneys for people with kidney failure. Tim Andrews recently became the longest patient to live with a pig kidney, reaching 271 days.

Wherever you are, specialized PKD care is closer than you think.📍 Our Centers of Excellence are leading the way in delivering expert care, advancing PKD research, and supporting patients and families. Find a PKD Foundation Center of Excellence near you 👉pkdcure.org/carecenters

In a new blog post published by PKD Foundation of Canada, Emily Campbell, shares practical and easy-to-apply strategies to help people with PKD make informed choices when eating out, without giving up the pleasure of good food 👉 www.endpkd.ca/smart_strate... #PKD #PKDInternational

There is growing excitement around new ADPKD therapies in clinical trials that can increase the amount of polycystin protein produced in the cells, with the potential to slow, stop, or even reverse cyst growth. 🧵⬇️

Join us for episode six of PKD Chronicles as we unravel the story behind tolvaptan, a medication revolutionizing the treatment landscape for polycystic kidney disease. 🎧 Listen now: go.pkdcure.org/Podcast6Social

We’re excited to announce a development in ADPKD research. Last week, Vertex announced the launch of its Phase 2 AGLOW study to test VX-407, a potential treatment for slowing or reducing abnormal kidney growth in certain people with ADPKD. news.vrtx.com/news-release...

🌍 At PKD International, we’re committed to amplifying key educational opportunities for our community. Don’t miss the @pkdfoundation.bsky.social webinar on the unique challenges of ADPKD for women, pregnancy & children. All info in the original post.👇💛

In our upcoming webinar, learn about the unique challenges ADPKD presents for women, pregnant individuals, and children. Register today ⬇️ pkdcure-org.zoom.us/webinar/regi...

Rep. Emanuel Cleaver (D-MO) and Rep. Sam Graves (R-MO) recently introduced a bipartisan resolution to officially recognize September as PKD Awareness Month. This national recognition helps raise awareness for hundreds of thousands impacted by this disease. 👏 cleaver.house.gov/media-center...

Congratulations to the PKD Foundation’s 2024 Congressional Champions of the Year! We’re proud to honor Rep. Emanuel Cleaver (D-MO) and Rep. Carol Miller (R-WV) for their leadership and ongoing support of legislation that benefits the PKD community.

In Episode 5 of PKD Chronicles, we sat down with nephrologist and PKD researcher Neera Dahl, M.D., to discuss how clinical trials and patient registries fuel progress in research and treatment development. 🎧 Listen now: go.pkdcure.org/Podcast5Social

Xenotransplants, enabled by the generation of CRISPR gene-edited pigs, may help address the U.S. kidney transplant waitlist, which includes about 90,000 people. Two companies will begin clinical trials of this technology later this year. www.cnn.com/2025/09/08/h...

Join us on Tuesday, September 30 for the final part of our four-part webinar series, “Confidently Navigating ADPKD: Understanding the New KDIGO Guidelines.” Register today at pkdcure-org.zoom.us/webinar/regi...

I’m grateful to the @pkdfoundation.bsky.social for honoring me with the 2024 Congressional Champion of the Year Award for my work to bring attention to this disease while fighting for additional investments in new treatments.

Let’s get the facts straight. The more we talk about PKD, the more informed our communities become. Get involved with #PKDAwarenessDay at pkdcure.org/awarenessday

PKD Awareness Day is right around the corner. Here are four ways you can get involved on September 4th 🧵⬇️