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

Don’t miss our webinar, “Managing ADPKD: Treatments, Lifestyle, & Living Well,” happening this Tuesday, June 24. Gain expert insights into the latest KDIGO recommendations for ADPKD management. Let us know you’re coming! go.pkdcure.org/KDIGO2Social

Did you know some of your other health issues may be caused by PKD? Outside of the kidneys, PKD can affect and cause damage to many other parts of the body. Learn more about the potential related health complications of PKD at pkdcure.org/about-the-di...

Register for our upcoming webinar, to learn about... ➡️ Tolvaptan and other treatment options ➡️ Lifestyle and dietary changes that support kidney health ➡️ Strategies for pain management and mental well-being ➡️ The importance of a multidisciplinary care team go.pkdcure.org/KDIGO2Social

In Episode 2 of PKD Chronicles, we sit down with Lisa Smallwood Belk and Alix Piccirilli. They explore how the power of community, open communication, and self-advocacy can help people with PKD and their loved ones. 🎧 Listen now: go.pkdcure.org/Podcast2Social

Two bipartisan bills being considered in the 119th Congress would remove barriers to living organ donation and help reduce the kidney transplant waitlist. Use the PKD Foundation’s pre-drafted message to contact your legislators today: p2a.co/uVBmkzi

Part two of our four-part webinar series airs Tuesday, June 24. Led by two PKD Foundation Centers of Excellence clinic directors, session two will focus on treatment options, lifestyle modifications, and mental well-being in PKD patients. Register today at go.pkdcure.org/KDIGO2Social

Global pharmaceutical company Lupin has received FDA approval to market and sell a generic version of tolvaptan in the U.S., a meaningful step in expanding treatment access and lowering costs for families navigating life with ADPKD. www.bwhealthcareworld.com/article/lupi...

An exciting update in CRISPR gene therapy! It's still in the early stages, but advances like this could one day help people living with PKD.

Introducing our first-ever podcast series! Each episode of PKD Chronicles: Navigating Life with Polycystic Kidney Disease will explore stories, science, support, and resources for families impacted by PKD. We can’t wait to share our new resource with you this Thursday, May 15!

Missed our webinar, “Decoding ADPKD: Diagnosis, Prognosis, & Genetics”? The full recording is now available: youtu.be/FdFmWFnFVFQ Thank you to our Sponsor, Natera, for making this possible.

Regulus Therapeutics was recently acquired by Novartis Pharmaceuticals for $800 million. This is incredibly exciting news for the PKD community! 🧵⬇️

Don’t miss our webinar, “Decoding ADPKD: Diagnosis, Prognosis, & Genetics,” this Thursday, May 1. Gain expert insights into the latest KDIGO recommendations for ADPKD management. Let us know you’re coming! bit.ly/3XHwsuS

In our upcoming webinar, you’ll learn... ➡️ How ADPKD is diagnosed and what to monitor ➡️ Factors that impact disease severity ➡️ The genetics of ADPKD and when genetic testing is recommended ➡️ Ethical considerations and family planning Register today at bit.ly/3XHwsuS

Towana Looney's experimental kidney transplant from a gene-edited pig lasted for a record 130 days before eventually being rejected. Ms. Looney is now back on dialysis. Thank you for contributing to the rapid progress in the xenotransplantation field! www.science.org/content/arti...

30 days ago, funding for the Congressionally Directed Medical Research Programs was cut from $1.5B to $650M, directly impacting PKD research. We need your voice now. Contact your elected officials using our advocacy tool to send a pre-written email: p2a.co/pP22NQP

Thank you, @nkf-professionals.bsky.social, for an awesome Spring Clinical Meetings in Boston! See you next year in NOLA👋🏼 #NKFClinicals

Our team gained great insights at #NKFClinicals on enhancing continuity of care and patient-centered communication during treatment transitions. We're excited to apply these strategies across PKD Foundation programs and education initiatives! Speakers: Dr. David Henner and Darrin Garcia

Check out these posters from Columbia University and University of Kansas Medical Center & Polycystic Kidney Disease Outcomes Consortium (PKDOC) in the Hereditary Kidney Disease/PKD poster aisle at @nkf-professionals.bsky.social SCM25.

Vanessa Westerfield and Savanna Moore presenting their poster titled, "Patient-Centered Insights on Treatment Adherence and Social Determinants of Health in Patients with Autosomal Dominant Polycystic Kidney Disease," at @nkf-professionals.bsky.social SCM. Stop by G-498 to learn more!

Join us on Thursday, May 1 for part one of our four-part webinar series, “Confidently Navigating ADPKD: Understanding the New KDIGO Guidelines.” bit.ly/3XHwsuS

We are seeing exciting results from Regulus Therapeutics’ early-stage trial of Farabursen (RGL8429) for treating autosomal dominant polycystic kidney disease (ADPKD)! www.prnewswire.com/news-release...

Our latest research webinar is now available! Ronald Perrone, M.D., and Ann Walsh, ADPKD patient and PKD Foundation volunteer, share their insight from attending the American Society of Nephrology (ASN) Conference last November. www.youtube.com/watch?v=_trs...

Our refreshed pkdcure.org is live! We're excited to bring you a new website designed to better serve the PKD community. It is now easier than ever to find resources, get involved, and stay connected. We hope you enjoy exploring the new pkdcure.org.

Only 4-10% of people living with ADPKD get the disease because of a spontaneous mutation. That was the case for Dylan Bova. Diagnosed at 23, their life changed forever.

Our main asks during our in-person and virtual advocacy days 🧵⬇️ #endPKD

Wishing the best of luck to our incredible PKD Foundation advocates heading to Capitol Hill tomorrow and participating in Virtual Advocacy Day on Thursday! Remember, your voices are powerful. Thank you for speaking up and fighting for policies that support PKD patients and families. 💙👏