Dedicated to finding treatments and a cure for polycystic kidney disease (PKD). www.pkdcure.orghttps://bsky.app/profile/pkdfoundation.bsky.socialhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mkpxsduy5s2zEvery piece of information shared through the ADPKD Registry helps researchers better understand polycystic kidney disease. By participating, you can shape the future of ADPKD research. Join today ➡️ pkdcure.org/registry.30 Apr 2026 15:51 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mkpxsduy5s2zhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mk3ufgce6k2rAccording 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 https://youtu.be/59kBU9smVF022 Apr 2026 15:57 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mk3ufgce6k2rhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mjx5yoltj22rVolunteer 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.20 Apr 2026 19:06 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mjx5yoltj22rhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mj36zflzls2eIn 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: https://pkdcure.org/PKDChroniclesS1Ep1209 Apr 2026 16:09 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mj36zflzls2ehttps://bsky.app/profile/pkdfoundation.bsky.social/post/3miynetqums2lApril 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. https://www.consultantlive.com/view/rewriting-race-based-egfr-equation-changed-kidney-transplant-access08 Apr 2026 15:48 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3miynetqums2lhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3milyacsdqc2eCongratulations, 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.03 Apr 2026 14:58 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3milyacsdqc2ehttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mihjk7x6bc2dVirtual 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/PKDCON26Social01 Apr 2026 20:24 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mihjk7x6bc2dhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mi2ctu76bc2sWe 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.27 Mar 2026 14:20 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mi2ctu76bc2shttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mhstwiruhk2cFor 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. ⬇️ https://www.kansascity.com/opinion/readers-opinion/guest-commentary/article315155555.html24 Mar 2026 15:04 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mhstwiruhk2chttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mhqcii5yjc2c⏰ Let us know you’re coming to tomorrow’s webinar! 📣 PKD Advocacy in Action: What it Means and How to Get Involved. ➡️ pkdcure.org/AdvocacyWebinar2623 Mar 2026 14:47 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mhqcii5yjc2chttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mhg6vifvsc2tAt 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/PKDCON26Social19 Mar 2026 14:16 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mhg6vifvsc2thttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mgv5g2jvef2sBehind 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.12 Mar 2026 19:34 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mgv5g2jvef2shttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mgur4zfac22sFor 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.12 Mar 2026 15:54 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mgur4zfac22shttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mgujsrf2522sToday 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.12 Mar 2026 13:43 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mgujsrf2522shttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mgczew4vyc22We 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. 💙05 Mar 2026 14:34 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mgczew4vyc22https://bsky.app/profile/pkdfoundation.bsky.social/post/3mg3uofiibc2mWe 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/NKM202602 Mar 2026 18:21 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mg3uofiibc2mhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mfwodg5ojk2jOn 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: https://pkdcure.org/for-patients/patient-handbooks/28 Feb 2026 16:44 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mfwodg5ojk2jhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mfro2oy6cc2mThe 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.26 Feb 2026 16:56 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mfro2oy6cc2mhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mf567ozqi22jListen 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/PKDChroniclesS1Ep1018 Feb 2026 13:19 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mf567ozqi22jhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3me4pqk4c6s2dWe 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.05 Feb 2026 15:35 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3me4pqk4c6s2dhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mdxoieprsc2oHave 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). 🧵⬇️03 Feb 2026 15:29 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mdxoieprsc2ohttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mdnmiedtck2rPKD 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. https://pkdfoundation.jotform.com/25350345099906130 Jan 2026 15:27 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mdnmiedtck2rhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mdkzaxu6nk25Check 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 https://mcpress.mayoclinic.org/polycystic-kidney-disease/29 Jan 2026 14:38 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mdkzaxu6nk25https://bsky.app/profile/pkdfoundation.bsky.social/post/3mcuhthnlnk2aYou 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/2026AdvocacyDay20 Jan 2026 15:27 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mcuhthnlnk2ahttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mchuub5vs22zRegular 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. https://pkdcure.org/resources/5-tips-for-exercising-safely-in-winter-with-pkd/15 Jan 2026 15:16 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mchuub5vs22zhttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mbxewmzv6c2kDiet 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 https://pkdcure.org/PKDChroniclesS1Ep909 Jan 2026 01:48 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mbxewmzv6c2khttps://bsky.app/profile/pkdfoundation.bsky.social/post/3mbtrndo2422aThe 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/pkdnews07 Jan 2026 15:25 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3mbtrndo2422ahttps://bsky.app/profile/pkdfoundation.bsky.social/post/3m76njdbaak26PKD Foundation Center of Excellence Director Heedok Han, M.D. (Columbia University Irving Medical Center) shares what this could mean for patients.04 Dec 2025 18:55 +0000at://did:plc:koqhs5cedpmquwtiok2vkmrn/app.bsky.feed.post/3m76njdbaak26