• What's New in PKD: A Day of Learning

    What's New in PKD: A Day of Learning
    Listen to PKD experts from across the country discuss topics important to PKD patients. This year we will focus on the different health complications associated with PKD.
    See if your Chapter is participating and register

  • Learn the Facts About PKD

    Learn the Facts About PKD
    Polycystic kidney disease is one of the most common genetic diseases. It is the fourth leading cause of kidney failure and there is no treatment or cure.
    Learn more about PKD

  • Don't Miss the Celebration

    Gratitude: A Celebratory Benefit for the PKD Foundation
    Please join us in Dallas on Feb. 28 for our second annual Gratitude Benefit. We’ll be celebrating and honoring those who have made a considerable impact within the PKD community as we raise funds to help us fight PKD. Meet the 2015 Honorees and get your tickets here.

  • Help Us Bring an End to PKD

    Help Us Bring an End to PKD
    We're leading the fight against PKD by funding research to find treatments and a cure, and providing information and support to anyone affected by PKD.
    Learn how you can join the fight

  • Help Further Our Understanding of PKD

    Help Further Our Understanding of PKD
    We are excited to announce the release of our Request for Applications for two research fellowships. All applications are due by April 1, 2015.
    See if you're eligible and apply today!

PKD News

PillsTreatment for ADPKD Approved in Canada

Feb. 26, 2015

JINARC™ (tolvaptan) has been approved in Canada as a treatment for autosomal dominant polycystic kidney disease (ADPKD). JINARC™ was discovered in Japan by Otsuka Pharmaceutical and was first approved there for ADPKD in 2014. The Health Canada approval of JINARC™ is based on the results of the pivotal Phase 3 randomized, double-blind and placebo-controlled TEMPO 3:4 Trial, the largest study conducted to date in adults with ADPKD.

Read more

Early Data Suggest Kidney Allocation System Meeting Key Expectations

Jan. 30, 2015

Kidney transplant data from the first four weeks after implementation of the new kidney allocation system (KAS) suggest that a number of key outcomes are meeting expectations, while other trends merit continued close monitoring. These are detailed in a report released by UNOS.

Please note that early data may not be a reliable indicator of trends that will either change or become more pronounced as additional kidneys are recovered and transplanted. Data will be analyzed at regular intervals to continue to study the performance of the allocation system and identify areas of potential improvement.

Compared to trends before KAS implementation in early December 2014, the early results indicate three major changes that are consistent with key performance goals for the new system:

  • a seven-fold increase in transplants for patients with the highest immune system sensitivity (a CPRA score from 99 to 100 percent)
  • an increase in transplants for recipients outside the local donation service area, from about 20 percent before KAS implementation to about 35 percent
  • drop in the number of transplants where the donor age was 15 years or more different from the recipient age

Read the full OPTN/UNOS press release

Voices of PKD

Living with Polycystic Kidney DiseaseMaryKatherine Michiels-Kibler

Five years ago, at age 13, I was diagnosed with polycystic kidney disease (PKD) after a series of visits to the emergency room with severe abdominal pain and vomiting. PKD, which causes cysts to grow on the kidneys, eventually leads to kidney failure and can cause a kidney to weigh up to 30 pounds. I am the youngest person in my family to be diagnosed. PKD is a genetic disease and parents with PKD have a 50 percent chance of passing the disease to each of their children. My mother, grandfather and great grandfather all have PKD.

Not only did I find out I had a genetic disease with no treatment or cure, I also had to learn it was a disease that despite affecting thousands in the U.S. and millions world wide had many unknowns and inconsistencies. While as a young teenager all I wanted to do was ignore this imperfection I realized that because I was diagnosed at such a young age, I had the opportunity to help. Unwilling to accept the feeling of powerlessness when facing PKD my mom and I turned to The PKD Foundation, an organization solely dedicated to finding treatments and a cure for PKD, to get involved in a brighter future for the disease.

Read MaryKatherine's Story