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2023 Rare Kidneys on the Hill Day Success, Largest Event in Organization History

On July 12, NephCure hosted its Rare Kidneys on the Hill Day to raise awareness and advocate for legislative change to improve the lives of rare kidney disease (RKD) patients and their families. The event included meetings with Members of Congress and legislative staff, an in-person congressional briefing on NephCure policy priorities and initiatives, and networking opportunities for patients and their families. Sixty-one advocates from 20 states traveled to Washington, D.C. to participate in the annual fly-in, marking the largest in-person NephCure Hill Day ever.

NephCure’s Hill Day was preceded by a Rally Dinner on July 11, where advocates gathered to prepare for their congressional meetings, learn about urgent policy priorities impacting the rare disease community, and share stories about what inspires them to advocate. During the dinner, NephCure presented the Advocate of the Year award to Kimberly Queen, an RKD patient and advocate from Georgia.

The following day, advocates and NephCure staff conducted over 70 in-person meetings with staff from congressional offices in the U.S. House of Representatives and U.S. Senate, including the offices of Sen. Tammy Baldwin (D-WI), Sen. Bob Casey (D-PA), Sen. Bill Cassidy (R-LA), Sen. Patty Murray (D-WA), Sen. Tim Scott (R-SC), Sen. Debbie Stabenow (D-MI), Sen. Jon Tester (D-MT), Sen. Elizabeth Warren (D-MA), Rep. Gus Bilirakis (R-FL, 12), Rep. Lisa Blunt Rochester (D-DE, AL), Rep. Larry Bucshon (R-IN, 08), Rep. Suzan Delbene (D-WA, 01), and Rep. Teri Sewell (D-AL, 07).

During the Hill Day, NephCure also hosted a congressional briefing on the New Era of Preventing End-Stage Kidney Disease Act, a bill which is expected to be reintroduced in Congress in the near future. The briefing covered information on the unique role played by NephCure in uniting kidney disease stakeholders to find treatments and cures for RKD, the prevalence, patient impact, and significant cost of kidney disease, and how the New Era Act will improve the state of kidney care in America. NephCure is working closely with House champion offices on the reintroduction of the New Era Act.

“We are now at a point where the cost of not treating kidney disease is more expensive than treating the disease. Let’s not let 22 years of science and research go to waste because of lack of access,” said Joshua Tarnoff, NephCure’s CEO.

The hour-long event was moderated by Joshua Tarnoff, NephCure’s CEO, and included presentations from the following individuals:

  • Kelly Helm | Executive Director of Patient Engagement, NephCure
  • Laura Mariani, M.D. | University of Michigan, Division of Nephrology
  • Colleen White | Health Legislative Assistant, Office of Rep. Gus Bilirakis (R-FL, 12)
  • Imani Mintz | RKD Patient and NephCure Volunteer
  • Becca Garcia | Caregiver to Bria, her daughter who has RKD

You can watch the congressional briefing here.

NephCure develops Rare Kidneys on the Hill Day programming and policy priorities in accordance with its mission and in collaboration with the patient community.

Support for NephCure’s Rare Kidneys on the Hill Day 2023 was generously provided by platinum sponsors Calliditas Therapeutics, Novartis, and Travere Therapeutics, silver sponsors Boehringer Ingelheim, Chinook Therapeutics, and Vertex, and bronze sponsor, Otsuka.

View all photos from our Rare Kidneys on the Hill Day here.

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