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PKD Foundation @pkdfoundation.bsky.social · 5d

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

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PKD Foundation @pkdfoundation.bsky.social · 16d

With VX-407, it functions much like other small-molecule drugs Vertex has already developed and had approved for cystic fibrosis.

This proof-of-concept study will include 24 participants from around the world, each taking VX-407 for 52 weeks. To qualify, patients must undergo genetic testing.

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PKD Foundation @pkdfoundation.bsky.social · 16d

VX-407 is designed to target the source of ADPKD in patients with changes in the PKD1 gene. The way this investigational study drug works in the body is different from other treatments available for ADPKD.

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PKD Foundation @pkdfoundation.bsky.social · 16d

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...

Vertex Announces Key Advancements Across Kidney Portfolio | Vertex Pharmaceuticals Newsroom

- Food and Drug Administration granted Breakthrough Therapy Designation for povetacicept in IgA nephropathy; on track to file for accelerated approval in the U.S. in H1 2026 if 36-week interim analysis data positive - - Enrollment completed for interim analysis cohort of AMPLITUDE global Phase 2/3...

news.vrtx.com

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Reposted by PKD Foundation

PKD International @pkdinternational.bsky.social · 20d

🌍 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.👇💛

PKD Foundation @pkdfoundation.bsky.social · 23d

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...

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PKD Foundation @pkdfoundation.bsky.social · 23d

This webinar is supported by a sponsorship from Otsuka. The PKD Foundation retains full control over the content and speaker selection to ensure unbiased, high-quality education for our community.

PKD Foundation @pkdfoundation.bsky.social · 23d

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...

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PKD Foundation @pkdfoundation.bsky.social · 27d

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...

Reps. Cleaver, Graves Introduce Bipartisan Resolution to Designate September as National Polycystic Kidney Disease Awareness Month

(Washington, D.C.) – This week, U.S. Representatives Emanuel Cleaver, II (D-MO) and Sam Graves (R-MO) introduced a resolution to designate September as "National Polycystic Kidney Disease Awareness Mo...

cleaver.house.gov

PKD Foundation @pkdfoundation.bsky.social · 28d

Join our Congressional Champions in their advocacy efforts by becoming part of our Advocacy Champions Network! Learn more at pkdcure.org/advocacy/

Advocacy

Advocacy - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re goin...

pkdcure.org

PKD Foundation @pkdfoundation.bsky.social · 28d

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.

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PKD Foundation @pkdfoundation.bsky.social · Sep 12

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

PKD Foundation @pkdfoundation.bsky.social · Sep 11

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...

Pig kidney transplants take a step forward with approval of human trials | CNN

Scientists continue to make progress with research on how well pig organs might perform in humans, and now they’re ready for the next step: larger-scale clinical trials.

www.cnn.com

PKD Foundation @pkdfoundation.bsky.social · Sep 9

*This webinar is supported by a sponsorship from Otsuka. The PKD Foundation retains full control over the content and speaker selection to ensure unbiased, high-quality education for our community.

PKD Foundation @pkdfoundation.bsky.social · Sep 9

*Our 4-part educational series is designed to help patients and families better understand the latest KDIGO recommendations for ADPKD management.

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PKD Foundation @pkdfoundation.bsky.social · Sep 9

*The Kidney Disease: Improving Global Outcomes (KDIGO) 2024 Guidelines for ADPKD provide the latest evidence-based recommendations to help patients, caregivers, and healthcare providers navigate the complexities of autosomal dominant polycystic kidney disease (ADPKD).

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PKD Foundation @pkdfoundation.bsky.social · Sep 9

In this fourth session, we’ll focus on the unique challenges ADPKD presents for women, pregnant individuals, and children. Discussion will cover pregnancy risks, hypertension, birth control considerations, and pediatric care strategies.

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PKD Foundation @pkdfoundation.bsky.social · Sep 9

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...

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Reposted by PKD Foundation

Rep. Emanuel Cleaver @cleaver.house.gov · Sep 5

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.

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PKD Foundation @pkdfoundation.bsky.social · Sep 4

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 Foundation @pkdfoundation.bsky.social · Aug 28

4️⃣ Advance Research

Make PKD Awareness Day the day you help move research forward! By participating in the ADPKD Registry, you can securely and confidentially provide information that will help guide PKD researchers in the search for treatments and a cure. pkdcure.org/registry

The ADPKD Registry - Polycystic kidney disease | PKD treatment research | PKD Foundation

Registry Update — a collection of persons with autosomal dominant polycystic kidney disease (ADPKD) — gives you power to drive the next medical breakthrough.

pkdcure.org

PKD Foundation @pkdfoundation.bsky.social · Aug 28

3️⃣ Share the Facts

Many don’t know that PKD is the fourth leading cause of kidney failure and one of the most common genetic diseases. Help spread the word by sharing PKD facts. Find premade graphics at pkdcure.org/get-involved...

PKD Awareness Day - Polycystic kidney disease | PKD treatment research | PKD Foundation

Sept. 4 is PKD Awareness Day. To show support you can wear teal, share your story, join the APDKD Registry, Walk for PKD, donate, advocate.

pkdcure.org

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PKD Foundation @pkdfoundation.bsky.social · Aug 28

2️⃣ Share Your Story

It could inspire someone to seek support, inform someone unfamiliar with PKD, or even motivate a researcher to find the next breakthrough. Share your story at pkdcure.org/blog/voice/ or post on social, tag us, and we’ll reshare it on Awareness Day.

Voices Archive - Polycystic kidney disease | PKD treatment research | PKD Foundation

pkdcure.org

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PKD Foundation @pkdfoundation.bsky.social · Aug 28

1️⃣ Tell one person about PKD

Start a conversation. Sometimes the best way to raise PKD awareness is simply by talking about it.

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PKD Foundation @pkdfoundation.bsky.social · Aug 28

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

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PKD Foundation @pkdfoundation.bsky.social · Aug 27

The PKD Foundation and American Society of Nephrology fund this prestigious annual award that supports early-career kidney researchers.

Learn more about Dr. Messing and her research: www.kidneycure.org/pages/qa.asp...

KidneyCure | Spotlights/Q&A - Who We Fund

Learn more about who KidneyCure funds.

www.kidneycure.org

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