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Philadelphia, PA — October 15, 2025 — NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare, protein-spilling kidney diseases, has released a new white paper outlining key state policy recommendations aimed at improving care, diagnosis, and access for individuals living with rare kidney diseases (RKD).
The report is the result of NephCure’s 2024 virtual roundtable entitled Rare Opportunities in State Policy to Prevent End-Stage Kidney Disease, which convened a diverse group of state health officials, physicians, researchers, patient advocates, and industry partners. The roundtable was designed to identify actionable opportunities for states to strengthen RKD policy, address access gaps, and improve early diagnosis and treatment.
“Our virtual roundtable brought to light the need for state-level action to help improve care for rare kidney disease patients,” said Matthew Johnson, Director of Government Relations and Advocacy at NephCure. “This new white paper provides a roadmap for states to take meaningful steps to improve outcomes and reduce diagnostic journeys.”
The white paper outlines several core recommendations for state policymakers, including:
- Create an RKD pilot screening program in Medicaid or state health systems for at-risk populations to support earlier diagnosis to prevent end-stage kidney disease.
- Support legislation that allows for telehealth flexibility, particularly for those living with rare diseases, so patients can access specialists
- Establish a state awareness campaign to educate on RKD diagnosis, treatment, and care for patients served by, or care providers compensated by, state-regulated insurance.
- Ensure the RKD voices are present in state policy by increasing the role of our community in existing rare disease advisory councils (RDACs) and kidney taskforces.
By bringing together multi-sector expertise and patient perspectives, NephCure’s state advocacy initiative continues to advance policies that help prevent progression to kidney failure and enhance quality of life for people living with rare kidney diseases.
The full white paper, “Rare Opportunities in State Policy to Prevent End-Stage Kidney Disease,” is now available on NephCure’s website click here.
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.
