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NephCure Launches National Coalition to Advocate for Policy Solutions that Revolutionize Rare Kidney Disease Care & Improve Patient Outcomes 

We deserve better - New Era Act in Rare Kidney Disease Care - Advocacy

Philadelphia, PA, June 12, 2024 – NephCure, a leading national patient advocacy organization dedicated to accelerating research and finding better treatments for rare kidney diseases, today announced the launch of the New Era Coalition, a first-of-its-kind initiative uniting diverse communities to transform the landscape of research, treatment, and care for rare kidney diseases (RKD). The New Era Coalition brings together patient advocacy groups, medical experts, academic leaders, industry, and other key stakeholders to advance policy and regulatory solutions that move kidney care upstream. The New Era Coalition will advocate for federal and state policies that work to improve outcomes for RKD patients, including the New Era of Preventing End-Stage Kidney Disease Act, H.R. 6790 (“New Era Act”).

“We are proud to spearhead the formation of the New Era Coalition and unite communities to revolutionize rare kidney disease care, improve patient outcomes, and pave the way for a better future for those affected by these diseases,” said Britta Dornan, NephCure Executive Director of Strategic Relations. “For too long, rare kidney disease patients and caregivers have felt powerless and alone, but together we can effect real change. The time has come for policymakers in Washington and states to listen and take decisive action to improve treatment and care for rare kidney disease communities, including by passing the New Era Act this year.” 

More than a dozen influential organizations and patient advocates have joined as New Era Coalition inaugural members to champion policy and advocacy solutions for the RKD community. Alongside NephCure, New Era Coalition members include patient advocates Mary Baliker, Seferiana Day, and Imani Mintz and organizations including the Alport Syndrome Foundation, American Kidney Fund, American Society of Nephrology, Black Women’s Health Imperative, Chronic Disease Coalition, IgA Nephropathy Foundation, International Society of Glomerular Disease, National Kidney Foundation, National Minority Quality Forum, Northwest Kidney Council, and the Rare Disease Diversity Coalition. New Era Coalition advisory members include Arkana Laboratories, Novartis Pharmaceuticals Corporation, Otsuka America Pharmaceutical Inc., Travere Therapeutics, and Vertex Pharmaceuticals.

During the 118th Congress, the New Era Coalition will pursue robust efforts to ensure the passage of the New Era Act. Introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), the New Era Act stems from the community insights gained in 2020 by NephCure and partner organizations from the ‘We Deserve Better: Revolutionizing Rare Kidney Disease Roundtable’ and its resulting white paper.This legislation aims to help people with RKD by finding and treating diseases earlier, enhancing patient and provider education, and conducting more research. The New Era Act would lessen the impact of RKD on people’s lives and reduce costs for patients and the health care system in the long run.

About the New Era Coalition

The New Era Coalition brings together patient advocacy groups, medical experts, academic leaders, industry, and other key stakeholders, to transform the landscape of research, treatment, and care for rare kidney diseases (RKD).

About 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.

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