ROCKVILLE, Md., Oct. 01, 2026 (GLOBE NEWSWIRE) -- Today, the American Kidney Fund (AKF) and the IgA Nephropathy Foundation are on Capitol Hill with more than 80 advocates who are living with rare kidney diseases to urge elected officials to support important legislation for the kidney community. Specifically, advocates will ask for legislators to support the New Era of Preventing End-Stage Kidney Disease Act (H.R. 1518), the Access to Genetic Counselor Services Act of 2025 (H.R. 6280/S. 3607) and the Living Donor Protection Act (H.R. 4582/4583/S. 1552). These bills would improve access to critical healthcare services for people living with rare kidney diseases.
“People living with a rare kidney disease often have a more difficult time receiving an accurate diagnosis, which can mean they do not receive the best course of treatment right away,” said LaVarne A. Burton, AKF President and CEO. “Early detection and prevention are the best ways to stop or slow the progression of kidney disease to kidney failure, and misdiagnosis or lack of access to healthcare services can make a critical difference in preserving kidney function. Along with the IgA Nephropathy Foundation, we are proud to stand together to ask for support for legislation that would help address these needs.”
Advocates from AKF attending Rare Kidney Disease Advocacy Day today are also members of AKF’s Rare Kidney Disease Action Network (RKDAN). AKF’s RKDAN was launched in 2024 to help ensure that the voices of people fighting rare kidney diseases are heard and amplified. Members of the network live with many 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). Advocates from the IgA Nephropathy Foundation represent people living with IgAN, which causes inflammation and damage to the kidneys, reducing their ability to filter waste and fluid from the bloodstream.
“By joining forces with the American Kidney Fund for Hill Day, we are amplifying the voices of people affected by IgA nephropathy and bringing their experiences directly to policymakers,” said Bonnie Schneider, director and co-founder of the IgA Nephropathy Foundation. “Together, we can raise awareness of the challenges this community faces and advocate for policies that promote earlier diagnosis, greater access to care, and continued innovation in treatment. We are proud to stand alongside patients, care partners, and advocates to help create a better future for everyone affected by IgAN.”
More information about the bills being discussed today is listed below:
- New Era of Preventing End-Stage Kidney Disease Act (H.R. 1518) would support rare kidney disease research, earlier diagnosis, provider education and better care access, especially in rural and disproportionately affected communities.
- The Access to Genetic Counselor Services Act of 2025 (H.R 6280/S. 3607) would expand Medicare access to genetic counseling by recognizing genetic counselors as practitioners who can bill Medicare directly.
- The Living Donor Protection Act (H.R. 4582/4583/S. 1552) would prevent insurers from declining or limiting coverage for a person under any life insurance policy, disability insurance policy or long-term care insurance policy due to the status of such a person as a living organ donor.
AKF is grateful to the sponsors of the RKDAN whose support helps make AKF’s Rare Kidney Disease Advocacy Day possible: Changemaker Sponsor Travere Therapeutics, Impact Sponsors Amgen and Otsuka America Pharmaceutical, Inc. and Partner Sponsor Vertex Pharmaceuticals.
The IgA Nephropathy Foundation thanks the supporters of its advocacy day: Travere 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
