Rare Kidney Disease Community Members Join American Kidney Fund and IgA Nephropathy Foundation on Capitol Hill to Champion Key Legislation

ROCKVILLE, Md., Sept. 11, 2025 (GLOBE NEWSWIRE) -- Today, the American Kidney Fund (AKF) and the IgA Nephropathy Foundation, joined by more than 50 advocates living with rare kidney diseases, are convening on Capitol Hill to rally support for policy measures that are urgently needed in the kidney community. Members of AKF's Rare Kidney Disease Action Network (RKDAN), advocates with the Foundation and health care professionals will meet with lawmakers and urge them to support key legislation that, if passed, would significantly improve health care services for people with rare kidney disease, increase awareness of rare kidney disease, ensure living donors can take time off work to donate an organ and protect living donors from insurance discrimination. 

"There are approximately 150 different rare kidney diseases, and not nearly enough resources dedicated to improving understanding and knowledge of these conditions. People with rare kidney disease often struggle to receive an accurate diagnosis or access quality health care, so our efforts today will focus on garnering support for the New Era of Preventing End-Stage Kidney Disease Act, which would address these issues and more," said LaVarne A. Burton, AKF President and CEO. "We are also continuing to push for passage of the Living Donor Protection Act. Living organ donors are often discriminated against by insurance companies or not able to take the necessary time off from work after they donate an organ, which may discourage future living kidney donors from giving the gift of life. 

"By passing these bills, Congress will help ensure that health care professionals will have the knowledge and information they need to provide personalized, quality treatment to people living with rare kidney disease and living kidney donors will have the support they deserve, which will ultimately save lives. We are proud to work alongside members of AKF's Rare Kidney Disease Action Network and the IgA Nephropathy Foundation to champion these critically important bills."     

"Our Hill Day, in partnership with the American Kidney Fund, is a powerful reminder that the patient voice is the most compelling force for change," said Bonnie Schneider, director and co-founder of the IgAN Foundation. "By advocating for the Living Donor Protection Act and the New Era Kidney Disease Act, we are directly addressing the legislative barriers that stand between our community and a longer, healthier life."

More information about the bills being discussed today is listed below:

• 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.
• A related bill, the Living Donor FMLA Protection Act (H.R. 4582), would codify a 2018 Department of Labor opinion letter that states people have protections under the Family and Medical Leave Act (FMLA) if they want to take time off work to donate an organ. 

AKF's RKDAN was launched last year to help ensure that the voices of people fighting rare kidney diseases are heard and amplified. Members of the network live with rare and genetic kidney diseases including polycystic kidney disease (PKD), IgA nephropathy (IgAN), Alport syndrome, lupus nephritis, focal segmental glomerulosclerosis (FSGS) and APOL1-mediated kidney disease (AMKD). AKF facilitates training for members so that they can learn about policy issues impacting kidney care and effective ways to educate lawmakers and the public about kidney disease and their kidney journeys.

"As someone living with lupus, I understand firsthand the challenges that rare kidney diseases pose — not only physically but emotionally and socially," said Veronica "Ronni" Behrend, transplant financial coordinator at University Health System in San Antonio, Texas. "Advocacy days like this on Capitol Hill are crucial to raise awareness, push for better research funding, and ensure patients receive the care and support they deserve. Together, we can make a meaningful difference for those affected by these often-overlooked conditions.

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.  

The IgAN Foundation thanks the supporters of its advocacy day: Travere Therapeutics, Calliditas Therapeutics, Otsuka Pharmaceutical, Inc., Novartis Pharmaceuticals and Vertex Pharmaceuticals.

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About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nonprofit with the greatest direct impact on people with kidney disease. AKF works on behalf of the 1 in 7 American adults living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through post-transplant living. AKF fights for kidney health for all through programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy. AKF is one of the nation’s top-rated nonprofits, investing 96 cents of every donated dollar in programs, and it has received 24 consecutive 4-star ratings from Charity Navigator as well as the Platinum Seal of Transparency from Candid, formerly known as GuideStar.

For more information, please visit KidneyFund.org, or connect with AKF on Facebook, Bluesky, X, Instagram and LinkedIn.

About the IgA Nephropathy Foundation 

The IgA Nephropathy Foundation, founded 21 years ago, is the largest patient-led organization dedicated to supporting individuals and families affected by IgA Nephropathy (IgAN). Through its patient-centric approach, the foundation has become a powerful voice for the community, providing vital resources for education, fostering a strong peer-to-peer support network, and aggressively advocating for legislative change to accelerate research and improve access to care. For more information, please visit www.IGAN.org or connect on Facebook, Instagram, and X.

Nancy Gregory
American Kidney Fund
(240) 292-7077
ngregory@kidneyfund.org

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