NephCure is the leader in advocacy by representing the interests of rare kidney disease patients and their families, both on Capitol Hill and within federal agencies concerned with the study and treatment of these conditions.

Our advocacy efforts aim to improve the lives of the patients and families we represent by raising disease-specific awareness and advocating for increased research funding and stronger support for our community.


NephCure Policy Priorities

NephCure develops its policy priorities in accordance with its mission and in collaboration with the patient community.


Cosponsor the New Era for Preventing End-Stage Kidney Disease Act

Increase Funding for Medical Research and Education and Awareness Activities

Continue to Include Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome in Defense Research Activities 

Cosponsor The Living Donor Protection Act (LDPZ) of 2023, H.R. 2923/S. 1384

Cosponsor The Safe Step Act, H.R. 2630/S. 652

Cosponsor the HELP Copays Act (H.R. 830/S. 1375)

The NephCure Action Network

The NephCure Action Network (NCAN) is a movement of patients with rare kidney disease and their caregivers, physicians, and partner organizations who all have one goal: to save kidneys and save lives through lasting legislative and policy improvements. Joining our coalition will allow you to amplify your voice heard and share your stories to educate and help policymakers understand what’s important to those directly impacted by rare kidney disease.

Learn more

The New Era Act

The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”) has the potential to bring about significant positive changes in how we understand, treat, and study rare kidney diseases (RKD). This legislation can help our community by finding and treating RKD earlier, enhancing RKD education of doctors and patients, and conducting more RKD research. Learn more and help support passage of this important legislation.

Learn more


The Latest Events & News

Patient Program

Insurance Access Town Hall Webinar

August 8

Patient Program

Rare Kidneys Connect – Baltimore

August 17


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


NephCure Patient & Youth Summit 2024 Unites Rare Kidney Disease Community in San Antonio

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