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NephCure mobilized nearly 70 patients, advocates, and medical professionals to advocate for federal legislation to improve the understanding and treatment of rare kidney diseases.
Washington, DC, August 8, 2024 – NephCure, the only national kidney organization squarely focused on rare, protein-spilling kidney diseases, hosted its annual Rare Kidneys on the Hill Day in late July to advocate for the New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790), bipartisan federal legislation to improve the lives of rare kidney disease patients. The annual Hill Day included nearly 90 in-person meetings with members of Congress and legislative staff followed by an evening reception for congressional staff, patients, and their families. Sixty-eight advocates, including six physician advocates, from 22 states traveled to Washington, D.C. to participate in the annual event. As a direct result of Hill Day, an additional eight members of Congress across political parties signed on to co-sponsor the New Era Act, bringing the total number of cosponsors to 14.
NephCure advocates and staff conducted nearly 90 in-person meetings with congressional staff from the U.S. Senate and House of Representatives, more than they had ever held at a Rare Kidneys on the Hill Day before. Advocates met with staff from Congressional offices including Representatives Jefferson Van Drew (R-NJ), Susan Wild (D-PA), Michael Lawler (R-NY), Glenn Thompson (R-PA), Bill Pascrell (D-NJ), and Bill Posey (R-FL).
“The New Era Act gives hope to the kidney disease community, offering a comprehensive approach to early detection, provider education, and innovative treatments that will enhance the quality of life for patients and their families,” said Matthew Johnson, Director, Government Relations and Advocacy at NephCure. “We are incredibly grateful to the dedicated advocates who participated in this Hill Day to urge Congress to pass the New Era Act to help usher in a new era of kidney health. It’s the courage and commitment of patients living with rare kidney diseases, their families, and the physicians who care for them that are the driving force behind NephCure.”
Introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), the New Era Act is bipartisan legislation aimed at transforming the way our nation approaches kidney health through early detection, research, and innovative treatments to combat kidney disease. The New Era Act seeks to expand access to screening and educational resources, invest in cutting-edge research, and enhance care coordination for patients with kidney disease. By prioritizing diagnosis and innovation, the New Era Act holds the promise of improving the lives of millions of Americans at risk of or living with kidney disease, while also reducing associated healthcare costs.
You can watch a video of Rare Kidneys on the Hill Day here.
About NephCure
NephCure is the only kidney organization focused on nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. They are working on creating a new reality where more rare kidney disease (RKD) therapies exist, and more patients get the care they need.
To date, NephCure has invested $40 million into rare kidney disease research, growing the number of interventional drug trials for RKD from zero to more than sixty and counting. Everything Nephcure does is for RKD patients, connecting them and their families to the best care, resources, and community support available. NephCure collaborates directly with government officials and industry partners to pave the way for more clinical trials, drug approvals, and community awareness. By building bridges between patients, families, healthcare providers, and other key stakeholders, they lift everyone up under one common purpose: to find a cure for rare kidney disease.
About the New Era Act
The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”), introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), has the potential to bring about significant positive changes in how we understand, treat, and study rare kidney diseases (RKD).
Empower Patients & Communities. The New Era Act will support public information and patient education campaigns, promoting informed communities and empowering patients to take charge of their health care journey.
