PKD Foundation
@pkdfoundation.bsky.social
Dedicated to finding treatments and a cure for polycystic kidney disease (PKD). www.pkdcure.org
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
Registration is now open: pkdcure.org/2026AdvocacyDay
January 20, 2026 at 3:27 PM
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
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-...
Read more on today's blog.
pkdcure.org/resources/5-...
January 15, 2026 at 3:16 PM
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-...
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
Listen now: pkdcure.org/PKDChroniclesS1Ep9
PKD Chronicles: Nourishing Families: A Dive into Nutrition and Cooking
Download Transcript In this episode, we journey into the world of nutrition and cooking, exploring what it truly means to nourish our families well. We begin by unpacking general ...
pkdcure.org
January 9, 2026 at 1:48 AM
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
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
Subscribe today. 📥 go.pkdcure.org/pkdnews
January 7, 2026 at 3:25 PM
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
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.
December 4, 2025 at 6:55 PM
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
No one should miss out on life because of PKD. Give today. go.pkdcure.org/GT25Social
December 2, 2025 at 3:23 PM
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
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
❣️ 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
December 1, 2025 at 6:22 PM
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
❣️ 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). 🧵⬇️
November 18, 2025 at 3:30 PM
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
🎧 Listen now go.pkdcure.org/Podcast7Social
November 13, 2025 at 6:48 PM
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
🎧 Listen now go.pkdcure.org/Podcast7Social
Reposted by PKD Foundation
🤝 #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
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
November 4, 2025 at 1:36 PM
🤝 #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
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.
November 3, 2025 at 3:38 PM
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
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
October 29, 2025 at 4:15 PM
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
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
Reposted by PKD Foundation
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
#PKD #PKDInternational
October 24, 2025 at 7:54 AM
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
#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. 🧵⬇️
October 16, 2025 at 2:39 PM
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
🎧 Listen now: go.pkdcure.org/Podcast6Social
October 10, 2025 at 3:44 PM
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
🎧 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...
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
September 29, 2025 at 6:00 PM
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...
news.vrtx.com/news-release...
Reposted by PKD Foundation
🌍 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...
Register today ⬇️
pkdcure-org.zoom.us/webinar/regi...
September 25, 2025 at 10:59 AM
🌍 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...
Register today ⬇️
pkdcure-org.zoom.us/webinar/regi...
September 22, 2025 at 2:49 PM
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...
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...
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
September 17, 2025 at 9:40 PM
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...
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.
September 17, 2025 at 2:03 PM
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
🎧 Listen now: go.pkdcure.org/Podcast5Social
September 12, 2025 at 3:57 PM
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
🎧 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...
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
September 11, 2025 at 6:40 PM
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...
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...
Register today at pkdcure-org.zoom.us/webinar/regi...
September 9, 2025 at 1:35 PM
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...
Register today at pkdcure-org.zoom.us/webinar/regi...
Reposted by PKD Foundation
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.
September 5, 2025 at 7:42 PM
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
The more we talk about PKD, the more informed our communities become.
Get involved with #PKDAwarenessDay at pkdcure.org/awarenessday
September 4, 2025 at 12:59 PM
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
The more we talk about PKD, the more informed our communities become.
Get involved with #PKDAwarenessDay at pkdcure.org/awarenessday