AKF urges patients to Know Your Cause through two important events

On Sept. 11 and 12, the American Kidney Fund (AKF) held two events that emphasize the importance of knowing the cause of your kidney disease. The first was our third annual Rare Kidney Disease Advocacy Day and the second was our sixth annual national Unknown Causes of Kidney Disease (UCKD) Summit. 

Here are some highlights from each of these important events.

Rare Kidney Disease Advocacy Day

For this event, AKF brought 25 advocates, including people living with rare kidney disease, caregivers and health care professionals, from 16 states to Capitol Hill. In 49 meetings held with the offices of elected officials — 4 meetings with the members of Congress present — throughout the day, members of AKF's Rare Kidney Disease Action Network (RKDAN) and AKF staff urged lawmakers to support two bills that (if passed) would help people living with rare kidney diseases.

New Era of Preventing End-Stage Kidney Disease Act (H.R. 1518) –­ If passed, this bill would improve, develop and deliver health care services to people with rare kidney disease by supporting research, promoting early intervention and diagnostic protocols, addressing health disparities in rural and disproportionately affected communities, improving provider education and reducing the costs of dialysis and transplantation.

Living Donor Protection Act (S. 1552/H.R. 4583) – If passed, this bill would prohibit insurers from denying or canceling coverage, refusing to issue coverage, changing the price of coverage, or otherwise modifying any aspect of a life, disability, or long-term care insurance policy for someone solely because they are a living organ donor.

By the end of the day, advocates had helped the House version of the Living Donor Protection Act gain 3 new cosponsors! 

UCKD Summit

The UCKD Summit is a critical part of AKF's UCKD Project, which launched in 2020 and seeks to improve understanding of how undiagnosed kidney disease or misdiagnosed causes of kidney disease directly impact patient care and outcomes. 

This year's summit focused on education and community outreach in rural and underserved areas.  Attendees heard from keynote speaker Matthias Kretzler, M.D., the Warner-Lambert/Parke-Davis Professor of Internal Medicine/Nephrology and Computational Medicine and Bioinformatics at the University of Michigan. In his speech, Dr. Kretzler discussed innovation in glomerular disease research and novel therapeutic approaches. He highlighted how these innovations relate to improving diagnosis and treatment for patients with misdiagnosed or undiagnosed conditions. 

The summit also included a panel featuring advocates Thelma Barber, Evan Dame, Alex Simmons and Tamara Walker, sharing their experiences with kidney disease and journey to diagnosis. The day also included community nephrologists discussing barriers they see with diagnosis and referral, and reports from the UCKD Project's workgroups that focus on public policy, health care professionals and patients and caregivers.

Thank you to all the advocates, health care professionals and other participants for sharing their time, knowledge and stories at these events. Your work is invaluable to AKF's efforts to help fight kidney disease on all fronts. 

AKF is grateful to its corporate sponsors whose support makes the UCKD Project possible: Title Sponsors Novartis Pharmaceutical Corporation and Travere Therapeutics, Inc.; Leadership Sponsors Boehringer Ingelheim, Otsuka America Pharmaceutical, Inc. and Vertex Pharmaceuticals Inc.; Champion Sponsors Alexion Pharmaceuticals, Inc., Natera, Novo Nordisk A/S and Sanofi, and additional support from Arkana Laboratories. 

AKF is grateful to the sponsors of the RKDAN whose support helps make AKF's Rare Kidney Disease Advocacy Day possible: Otsuka America Pharmaceutical, Inc. and Travere Therapeutics.