Kidney Advocacy Wins for Kids with Kidney Disease

There’s a lot to celebrate for children with kidney disease and the families who love them. These three new bills will help fund more research, reduce delays in care, and provide stronger support for living kidney donors. 

Here’s what that means for the kidney community.

For children with rare kidney diseases like autosomal recessive polycystic kidney disease (ARPKD), atypical hemolytic uremic syndrome (aHUS), or C3 glomerulopathy, treatment options have been extremely limited. 

About 70% of rare diseases begin in childhood, yet 95% have no approved treatments.

The Give Kids a Chance Act reauthorizes the Rare Pediatric Disease Priority Review Voucher program through 2029, incentivizing pharmaceutical companies to develop treatments for rare pediatric conditions. Since 2012, this program has enabled 62 new treatments for rare diseases affecting children, with over 40 disease communities receiving their first-ever treatment option.

After the program expired in late 2024 and stalled research efforts, this reauthorization restores momentum and hope for families waiting for breakthroughs that could slow disease progression, improve quality of life, or save lives.

Children with complex kidney conditions often need care from highly specialized providers—sometimes in another state. For families relying on Medicaid or CHIP, that has often meant frustrating delays while out-of-state doctors went through repeated enrollment and screening processes.

The Accelerating Kids’ Access to Care Act removes that barrier.

Under the new law, qualifying out-of-state providers can enroll in a child’s home-state Medicaid program for five years, without redundant paperwork, to treat patients under 21.

For kidney families, this means:

• Faster access to top pediatric transplant centers
• Fewer delays in joining specialized clinical trials
• Easier access to national experts in rare kidney diseases

When a child needs care, paperwork should never be the thing that slows it down.

Living kidney donation saves lives—but for many donors, the financial burden can be a real obstacle.

The Honor Our Living Donors (HOLD) Act removes a major barrier by ensuring that a transplant recipient’s income is no longer considered when determining whether a living donor qualifies for reimbursement through the National Living Donor Assistance Center (NLDAC).

The bill also includes a $1 million increase in funding for NLDAC, allowing the program to help more donors cover:

• Travel and lodging
• Lost wages
• Other donation-related expenses

With more than 90,000 people currently waiting for a kidney transplant, expanding support for living donors is a critical step toward saving more lives.

All three provisions take effect immediately:

• The Rare Pediatric Disease Priority Review Voucher program is reauthorized through September 30, 2029
• States must streamline Medicaid enrollment for out-of-state pediatric providers
• Living kidney donors now face fewer financial barriers, with expanded NLDAC eligibility and increased funding

These three bills represent years of advocacy by YOU: patients, families, and bipartisan champions in Congress. 

Together, they create a comprehensive support system: spurring development of new treatments, ensuring children can access specialized care when they need it, and expanding access to lifesaving kidney transplants. Thank you for your work and time in seeing these bills through to enactment!

Ready to become a kidney advocate? Join Voices for Kidney Health now.