those living with PKD

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What’s new in PKD?

We provide a combination of up-to-date research and detailed information

There’s so much happening in the PKD world — from important advancements in research and science to updates in critical legislation and information about how to manage your health. We got you covered right here.

Keep up to date on the latest news in PKD research and on the progress we are making, hear about important legislation that affects the PKD community, and learn about our education and fundraising events.

What's new?
Washington Summary November 2017

Health Care Congress continues to discuss ways to stabilize the ACA individual insurance market. More than 200 groups have endorsed the proposal drafted by Sens. Lamar Alexander (R-TN) and Patty Murray (D-WA). Other Senators and Representatives have their own proposals […]

Washington Summary October 2017

Health Care On Sept. 26, Senate Majority Leader Mitch McConnell (R-KY) indicated that the Senate would not vote on the most recent attempt to amend the Affordable Care Act (ACA).  Sens. Lamar Alexander (R-TN) and Patty Murray (D-WA) may seek […]

Tolvaptan and lixivaptan: what’s the difference?

In response to the news about lixivaptan’s orphan drug designation, there have been questions from the PKD community about the difference between the investigational drug and another potential ADPKD treatment, tolvaptan. Tolvaptan and lixivaptan are vasopressin V2 receptor antagonists, meaning […]

Live a fuller life

There’s hope after a PKD diagnosis and you don’t have to do it alone. Together, we are a strong community that supports one another so we can find hope and live our best lives with PKD. Voices of PKD is a collection of inspiring stories that tell the story of PKD.

Nell GustavsonVoices of PKD

I was diagnosed with PKD in 1987 at the age of 27. This was not a big surprise for me, especially since my father, grandmother and aunt all had the disease. The surprise was who donated a kidney to me—my niece, Liz, whom my older sister had placed for adoption at birth!

We are the
PKD Foundation

We are on a mission to end PKD. To do that, we fund and advocate for research and better health care, we support the PKD community so you can live your best life and we raise awareness to move closer to treatments and a cure.

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Your support matters!

There are so many ways to get involved with us. Whether you join one of our events or organize your own, it only takes a small step to make a big difference and move us closer to a future without PKD.

Know when
change happens

This is such an exciting time for PKD science! Advancements in PKD research are bountiful and we have the scoop to keep you up to date.