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Advocacy

NephCure is the leader in 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.

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NephCure Policy Priorities

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

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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.

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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.

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The Latest Events & News

Patient Program

NephCure Teens Support Group

May 27

Patient Program

NephCure Adult Support Group

June 13

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Students and Teachers Throw Pies to Raise Money fo…

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“Change is good; change facilitates growth.”

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Make Your Voice Heard

Discover how our advocacy initiatives are shaping the future of healthcare for those affected by rare kidney diseases. By joining forces with NephCure, you become an essential part of our mission to increase awareness, secure research funding, and provide unwavering support for our community.

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Become a Volunteer

Our volunteers help the rare kidney disease community thrive while advocating for important awareness and change. Explore open volunteering opportunities that need your support, and join us in our mission of empowering people with rare, protein-spilling kidney disease to take back their health.

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