Kidney Health Initiative (KHI)

KHI Patient and Family Partnership Council (PFPC)

Summary of the Kidney Health Initiative:

More than 20 million Americans have kidney disease, and more than 600,000 Americans have kidney failure, also known as end-stage renal disease (ESRD). Despite these staggering statistics, too few new drugs or devices have been approved to treat kidney disease in the past decade. Moreover, certain products on the market treating other organs and conditions may have adverse side effects on kidney health, raising serious patient safety concerns. There are also significant racial and ethnic health disparities at every stage of kidney disease. As the public health implications and economic burdens of kidney disease continue to grow, the care and safety of these patients warrant increased attention.

Recognizing both the lack of clinical trials focused on kidney disease and the huge unmet clinical need for the same, the American Society of Nephrology (ASN) and the U.S. Food and Drug Administration (FDA) established the Kidney Health Initiative (KHI) in September 2012 under a Memorandum of Understanding. KHI is dedicated to improving patient safety and promoting the development of the best possible therapies for diseases that affect the kidneys and quality of life for millions of people around the globe.

KHI Patient and Family Partnership Council:

The mission of KHI is to enhance patient quality & safety and foster innovation in kidney disease. Patients and their care partners are at the heart of the KHI mission. To further patient involvement in KHI, a Patient and Family Partnership Council (PFPC) will work closely with KHI Board of Directors and staff to advise and make recommendations on member project proposals, KHI projects and overall efforts of KHI so that the patient’s voice, experience and involvement is meaningful and effective. The KHI PFPC is comprised of up to 10 members who are patients, families, care partners and/or patient organization staff and faculty.

PFPC Charge:

To provide strategic guidance to KHI about how to activate and include the patients, their families and care partners in KHI activities, including but not limited to:

  1. Advise KHI members regarding patient involvement in their project proposals
  2. Outline opportunities for patients to serve once a project has been endorsed
  3. Identify patients to serve on project workgroups
  4. Collaborate on developing patient centered project(s) to submit for KHI endorsement

The KHI PFPC is not a decision making group. KHI PFPC’s ideas and recommendations will be made to the KHI Board of Directors for review and approval.

The current members of the KHI PFPC include:

KHI thanks previous members of the PFPC for their service and dedication:

  • Mr. Sam Pederson (2015-2016)

Conflict of Interest:

To view KHI's Conflict of Interest and Disclosure Policy please click here.

To view the PFPC's Disclosures, please click here.

If you have any questions about KHI or the PFPC, please do not hesitate to contact KHI at khi@asn-online.org.