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UPDATE (July 22, 2022): NephCure is proud to share the successful results of the first annual Rare Kidneys on the Hill Day, made possible by our dedicated, powerful community of rare kidney disease patients and families. These successes include:
- 127 Congressional meetings attended
- 62 Senate meetings
- 65 House of Representatives meetings
- 136 advocate attendees
- 32 states and Washington, D.C. represented
- 2 additional co-sponsors secured for the New Era of Preventing End-Stage Kidney Disease Act
WASHINGTON, D.C. (July 20, 2022) – NephCure Kidney International (NephCure) and the rare kidney disease community celebrate the success of Tuesday’s Rare Kidneys on the Hill Day. Rare Kidneys on the Hill Day, which takes place during NephCure’s Rare Kidney Disease Week, serves as the premier advocacy event for the rare kidney disease community.
Tuesday’s event brought together more than 100 rare kidney disease advocates from 30 states. Together, these advocates participated in more than 121 Congressional meetings where they shared their lived experiences with members of Congress and their staff while stressing the critical need to support H.R. 7506, the New Era of Preventing End-Stage Kidney Disease Act. The bill was introduced in the House of Representatives on April 14, 2022, by Reps. G.K. Butterfield (D-NC) and Gus Bilirakis (R-FL).
As a result of their dedication and efforts, rare kidney disease advocates were able to secure additional and vital co-sponsors for H.R. 7506. NephCure is ecstatic to now count Rep. Susan Wild (D-PA) as a co-sponsor of H.R. 7506 and a new champion for the rare kidney disease community. NephCure looks forward to following up with other members of Congress over the coming weeks to secure their support for this vital piece of legislation.
“The New Era of Preventing End-Stage Kidney Disease Act is a critical and much-needed piece of legislation built by and for the rare kidney disease community,” said Joshua Tarnoff, NephCure CEO. “Our advocates took part in an intensive advocacy training program and took time to understand H.R. 7506. I am proud of the work they’ve accomplished to advocate for the rare kidney disease community.”
Rare kidney diseases contribute to the more than $84 billion spent on treating Medicare beneficiaries with chronic kidney disease and the $36 billion spent on treating people with end-stage kidney disease (ESKD). However, there has been little to no innovation in treatment for kidney disease patients since the 1960s, when dialysis and immunosuppressants became commonly used. There are no FDA-approved treatments for rare kidney diseases, and many patients struggle to find a nephrologist who is well-versed in their conditions and can provide an accurate diagnosis and expert treatment.
The New Era of Preventing End-Stage Kidney Disease Act would help transform care delivery to rare kidney disease patients by increasing community and healthcare provider awareness and education, addressing kidney health disparities in communities of color, and advancing rare kidney disease research.
NephCure thanks Travere Therapeutics, Novartis, Boehringer Ingelheim Pharmaceuticals, Chinook Therapeutics, and Calliditas Therapeutics for their support, which allowed NephCure to bring together and empower the largest virtual gathering of rare kidney disease advocates ever. For more information on H.R. 7506 and NephCure’s advocacy efforts, please visit NephCure.org/NewEraAct.
About NephCure Kidney International
NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. 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 more than 40 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.
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