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

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.

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 🧵⬇️

Congratulations to Dr. Melina Messing, for winning the Jared J. Grantham Research Fellowship Award; the PKD specific Fellowship from the Ben J. Lipps Research Fellowship Program.

Our Advocacy Champions Network (ACN) brings together members of the community to advocate for federal funding for PKD research and legislation benefiting those with PKD. Join the ACN to help advance critical policies that shape the future of PKD care ⬇️ go.pkdcure.org/l/886163/202...

PKD Foundation Center of Excellence, Columbia University Medical Center, is hosting an educational event on PKD Awareness Day! Join on Thursday, September 4 for a free virtual event designed to educate, empower, and connect the PKD community. Learn more: eventleaf.com/e/ADPKD-9-2025

Missed our webinar, “Beyond the Kidneys – The Whole Body Impact of ADPKD”? The full recording is now available: youtu.be/biwCsXhTRkU & stay tuned for the final session in our webinar series, airing this fall, as we wrap up our exploration of the new KDIGO guidelines for ADPKD.

New developments are underway in the science of xenotransplantation! 🧵⬇️

Don’t miss our webinar, “Beyond the Kidneys – The Whole Body Impact of ADPKD,” happening tomorrow night! Gain expert insights into the latest KDIGO recommendations for ADPKD management. Let us know you’re coming! pkdcure-org.zoom.us/webinar/regi...

Applications are due soon! If you're working to move the field of PKD research forward, we invite you to apply for a PKD Foundation Research or Fellowship Grant. Learn more ⬇️

We were pleased to see the District of Columbia join 35 other states this week in enacting laws to protect living organ donors from insurance discrimination, an important step toward removing barriers to lifesaving donation. bit.ly/4f9H50X

In Episode 3 of PKD Chronicles, we continue our conversation with Lisa Smallwood Belk and Alix Piccirilli as they reflect on how PKD has shaped their lives and share how those impacted by PKD can make a difference in the community. 🎧 Listen now: go.pkdcure.org/Podcast3Social

We are now accepting applications for PKD Foundation Research and Fellowship Grants! The deadline to apply is August 11, 2025. Learn more about the research areas we are soliciting for and how to apply 👇 pkdcure.org/research/gra...

Missed our webinar, “Managing ADPKD: Treatments, Lifestyle, & Living Well?” The full recording is now available: youtu.be/l0gd8ID94vo

Congratulations to our 2025 PKD Foundation research grant and fellowship recipients! This year, we're proud to invest $2 million in ten research projects and three fellowships. Explore this important research and it's impact at go.pkdcure.org/Social25Grants

Excited to share that I've been awarded a research grant from @pkdfoundation.bsky.social to advance our work on polycystin signaling via extracellular vesicles in C. elegans, with the goal of uncovering new mechanisms relevant to polycystic kidney disease. #cilia #extracellularvesicles