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Advocacy
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.
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NephCure Policy Priorities
NephCure develops its policy priorities in accordance with its mission and in collaboration with the patient community.
LEARN MORECosponsor 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 moreThe 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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Rare Kidneys on the Hill Day
Rare Kidneys on the Hill Day is an event where advocates, including patients, patient parents and caregivers, raise awareness about rare kidney diseases by engaging with members of Congress. The event aims to influence policy decisions, promote research, and improve healthcare outcomes for those affected by rare kidney conditions. Learn more about this past year’s event and look forward to Rare Kidneys on the Hill Day 2025.
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