• PKD Foundation Annual Report Fiscal Year 2014

    PKD Foundation Annual Report Fiscal Year 2014
    We are proud to share with you what we accomplished together in fiscal year 2014
    (July 1, 2013 - June 30, 2014). Thank you for an incredible year!
    Read Our Annual Report

  • PKD Progress - Fall 2014

    PKD Progress Magazine
    The Fall 2014 issue of PKD Progress in now available.
    Read it online | Sign up to receive PKD Progress

  • Turkey Trot for PKD

    Turkey Trot for PKD
    This Thanksgiving season, run or walk with those you're thankful for to help a cause you're passionate about. When you do, you'll raise awareness and funds towards the fight to end polycystic kidney disease. Learn more and register

  • Gratitude: A Celebratory Benefit for the PKD Foundation

    Gratitude Benefit: Save the Date – February 28, 2015
    The Gratitude Benefit honors those who have made a considerable impact on local PKD Foundation Chapters, as well as significantly advanced the work of the PKD Foundation through fundraising and philanthropy. Meet our 2015 Honorees, and learn more about the Gratitude Benefit, including sponsorship opportunities at pkdcure.org/gratitude.

  • Walk for PKD

    Walk for PKD
    Fundraising for the Walk for PKD means bringing us $2 million closer to treatments and a cure for PKD. Your Walk may have already happened, but you can continue to fundraise and earn Walk for PKD prizes until Dec. 31! Visit walkforpkd.org »

PKD News

OPTN/UNOS Board Approves Policies on Living Donor Evaluation and Consent, Donor Disease Risk Assessment

Nov. 18, 2014

St. Louis – The OPTN/UNOS Board of Directors, at its meeting November 12-13, approved policies to ensure thorough and consistent processes are used in the medical evaluation and informed consent process for living organ donors. The policies specifically address living donation for kidney transplantation as well as segmental liver, lung, intestine and/or pancreas transplantation.

"These policies will support the needs and interests of people who choose to help a relative, a friend, or even a complete stranger through living donation," said Carl Berg, M.D., OPTN/UNOS president. "They standardize certain medical tests, evaluation criteria and informed consent processes at all transplant hospitals. The individual transplant team will still decide whether living donation is appropriate for a given potential donor. In many cases, the transplant program will perform additional tests and take additional steps to help them make that decision."

Similar policies have been in effect since February 2013 for living donor kidney transplantation, which is the most common form of living organ donation. The policies newly approved by the Board address commonalities for living donation of kidney, liver, lung, intestine and pancreas, while specifying additional criteria most appropriate to each organ type.

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HALT-PKD Study Finds Rigorous Blood-Pressure Control Could Slow Cyst Growth in ADPKD

Nov. 15, 2014

A presentation regarding the results of the HALT-PKD clinical trial was shared this morning at the American Society of Nephrology (ASN) Kidney Week meeting.

The HALT study is important to the PKD community because neither the optimal blood pressure target levels, nor the best medications for control of blood pressure in ADPKD, were known when the study was started in 2006 (the study was completed in June 2014). Currently, the complications of hypertension, including stroke and heart attack, affect many more individuals with ADPKD than ADPKD-specific complications such as liver cysts or brain aneurysms.

According to the New England Journal of Medicine: "These two studies provide important guidance for the care of patients with ADPKD. They show that blood pressure can be controlled with ACE inhibitors, drugs that have an acceptable safety profile. They suggest that rigorous blood-pressure control, early in the disease process, may slow cyst growth and reduce the left-ventricular-mass index, but this approach is complicated by increased dizziness."

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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