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NephCure is a leading patient advocacy organization advocating to ensure that all individuals with rare, protein-spilling kidney disease have equitable access to the care and treatments that offer them the best kidney health outcome possible. Each year, those affected by rare kidney disease (RKD) gather in Washington, D.C., for NephCure’s Rare Kidneys on the Hill Day.
Rare Kidneys on the Hill Day is an opportunity for advocates to raise awareness about rare kidney disease and make their voices heard by members of Congress on issues that directly impact their lives.
The event kicked off with a Rally Dinner on Wednesday, July 22, where 81 advocates connected with others from across 31 states and prepared for their meetings on Capitol Hill. On Thursday, July 23, advocates gathered on the steps of the U.S. Capitol for a group photo before filming videos and capturing photos to share on social media and raise awareness for the cause. Attendees then divided into state-based teams to meet with members of Congress and their staff, participating in as many as 115 meetings throughout Capitol Hill. The event concluded with a farewell dinner, where advocates reflected on the day’s successes and celebrated the impact of their collective efforts, marking this as NephCure’s largest and most impactful advoacy event to date
During Rare Kidneys on the Hill Day, advocates urged lawmakers to support three pieces of legislation. The primary focus was H.R. 1518, the New Era of Preventing End-Stage Kidney Disease Act. Attendees also advocated for the Living Donor Protection Act and the Kidney Disease Education Access and Expansion Act.
What Is the New Era of Preventing End-Stage Kidney Disease Act (H.R. 1518)?
The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”), introduced by Reps. Gus Bilirakis (R-FL) and Terri Sewell (D-AL), has the potential to transform how we understand, treat, and study rare kidney diseases. The legislation seeks to improve outcomes by promoting earlier diagnosis, expanding education for both patients and healthcare providers, and advancing research into rare kidney diseases.
Kidney disease affects more than 35 million people in the United States, creating significant health and financial burdens. Patients with rare kidney disease often experience delayed or inaccurate diagnoses, limited treatment options, and difficulty accessing specialists. These challenges can allow progression to end-stage kidney disease (ESKD), requiring dialysis or transplantation, or treatments that dramatically impact patients’ quality of life while increasing strain on the healthcare system.
The New Era of Preventing End-Stage Kidney Disease Act has the potential to make a meaningful difference in how we prevent, diagnose, treat, and understand rare kidney disease.
“ Every story shared on Capitol Hill puts a face to rare kidney disease (RKD) and reminds policymakers that RKD affects more lives than they realize. Together, NephCure and its advocates are building momentum for a future where early diagnosis, innovative treatments, and better outcomes are norm for every rare kidney disease patient,” said Matthew Johnson, Director of Government Relations and Advocacy at NephCure.
How to Get Involved
This year, NephCure empowered supporters across the country to participate from home by providing a simple tool to contact their representatives and encourage support for H.R. 1518. The advocacy tool remainsavailable for anyone who wants to get involved.
Using the representative finder and a pre-written phone script, anyone can contact their elected officials in less than five minutes and help advance policies that improve the lives of people living with rare kidney disease.
Click here to call your representative and urge them to support H.R. 1518:
https://nephcure.quorum.us/campaign/164095/
About NephCure
NephCure’s mission is to ensure that all individuals with rare, protein-spilling kidney disease have equitable access to the care and treatments that offer them the best kidney health outcome possible. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax-exempt 501(c)(3) public charity.
Support for NephCure’s Rare Kidneys on the Hill Day 2026 was generously provided by platinum sponsors: Travere Therapeutics, Vertex Pharmaceuticals, Novartis, Otsuka Pharmaceutical, and Keenova Therapeutics.
