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Washington, DC – August 19, 2025 – On July 23–24th, 2025, NephCure hosted its largest-ever Riñones raros en el día de la colina event that brought together 78 advocates from across 26 states, to raise awareness and educate lawmakers and advance legislative solutions for the rare kidney disease (RKD) community.
The advocacy event focused on building support for H.R.1518, the Ley de nueva era para la prevención de la enfermedad renal terminal (New Era Act), the only bipartisan legislation solely focused on RKD that was reintroduced during Rare Disease Week by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL). This landmark legislation aims to improve education and research, develop better diagnostic tools and effective treatments to delay kidney failure for individuals living with rare, protein-spilling kidney diseases like FSGS, IgAN, and minimal change disease. The bill would establish NIH Centers of Excellence to advance rare kidney disease research, expand early diagnosis through genetic testing, and improve care particularly in underserved communities. In addition, it calls for creating nephrology fellowships and primary care physician training to better diagnosis RKD and prevent long diagnostic journeys for patients. It also directs HHS to study treatments that could reduce the need for dialysis and transplants, with advocates urging Congress to maintain critical NIH funding to protect progress.
Reflecting on the importance of the event, Matt Johnson, NephCure’s Director of Government Relations and Advocacy, emphasized:
“Rare Kidneys on the Hill Day is about making sure the voices of patients and families are heard by policymakers in the halls of Congress. For far too long, rare kidney diseases have been overlooked in research funding, treatment development, and public awareness. This year, nearly 80 advocates met with 116 congressional offices to share their stories, push for critical legislation like the New Era Act, and ensure that rare kidney disease is a priority. We are incredibly grateful to the dedicated advocates who participated and it’s their courage and commitment that are the driving force behind NephCure.”
The event kicked off with a Rally Dinner the night before the meetings on the Hill, where participants connected over shared experiences and prepared to share their personal journeys with lawmakers. Nearly two-thirds of attendees were first-timers, and many came with stories of long diagnostic delays, limited treatment options, and emotional tolls of navigating complex conditions.
Over the course of two days, the NephCure community held 116 total meetings with congressional offices including 49 Senate, 67 House, and one direct Member-level meeting. These meetings spanned 26 states and included representation from 65 Democratic, 50 Republican, and one Independent office. In these meetings, advocates introduced themselves, shared their personal experiences with rare kidney disease, and explained how the New Era Act would directly impact their lives or the lives of their loved ones. These stories helped put a human face to the policy, reinforcing the urgency and need for congressional support. Their advocacy directly resulted in 13 new co-sponsors signing onto the New Era Act, bringing the total to 33 co-sponsors as of August 18th, 2025.
This progress would not have been possible without the collective effort of the RKD community and the support of our partners. NephCure extends its gratitude to our generous sponsors: Travere Therapeutics, Novartis, Otsuka and Vertex.
If you weren’t able to attend Hill Day, you can still make a difference in NephCure’s advocacy efforts. Contact your Members of Congress and urge them to support the Ley de Nueva Era, legislation that will advance critical research, improve patient outcomes, and bring us closer to better treatments for rare kidney diseases. Your voice matters and together, we can help ensure patients and families have the resources and hope they deserve.
Acerca de NephCure:
NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. 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.
