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What We Do

NephCure is the only kidney organization focused on nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. We’re creating a new reality where more rare kidney disease (RKD) therapies exist, and more patients get the care they need.

The Four Pillars of Our Mission

1

Funding & Advancing Research

To date, NephCure has invested $40 million into rare kidney disease research, growing the number of interventional drug trials for RKD from zero to more than 60 and counting.

2

Supporting Patients

Everything we do is for RKD patients. When they find themselves in the murky waters of a rare kidney disease diagnosis, we help connect them and their families to the best care, resources, and community support available.

3

Advocating for Change

NephCure collaborates directly with government officials and industry partners to pave the way for more clinical trials, drug approvals, and community awareness.

4

Creating a Community

We do everything better when we are together. By building bridges between patients, families, healthcare providers, and other key stakeholders, we lift everyone up under one common purpose: to find a cure for rare kidney disease.

NephCure Statistics

400+

Members of our advocacy network creating change

$40M+

NephCure funds invested to-date toward novel treatments

160+

NephCure Specialist nationwide provideing expert care

40K

Patients & families reached yearly through our programs

50+

Regional communities giving patients and families support

50+

Annual events bringing together the RKD community nationwide

How We’re Leading the RKD Revolution

Unique among other rare disease organizations, NephCure’s model engages every stakeholder group that touches the present and future of rare kidney disease. By building bridges between these groups, we transform lives: from connecting patients to expert NephCure specialists, to funding the next groundbreaking RKD therapy, and one day finding a cure.

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Managing Rare Kidney Disease

If you’re managing RKD, it’s easy to feel lost and overwhelmed. Explore our expert-curated resources to help you navigate your or your loved one’s disease. You’ll find information on finding a NephCure specialist, active clinical trials, available treatments, and more. 

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Related Resources

Video

Plant-Based Diet and Kidney Disease

Video

Mental Health Patient and Caregiver Panel

Video

Newly Diagnosed Parents – Nephrotic Syndrome 101

Educational Materials

School Accomodations

ALL RESOURCES
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Supporting Patients Every Step of the Way

The diagnosis of rare kidney disease can feel disorienting, scary, and lonely—all at once. Helping patients and their families navigate their disease is our top priority. Through connecting patients to expert specialists, communities, resources, and more, we empower those affected by RKD to take charge of both their health and their life. 

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The Latest Events & News

Fundraiser|Patient Program

5th Annual Boogie on the Bayou

July 20

Patient Program

NephCure Teens Support Group

July 22

News

Students and Teachers Throw Pies to Raise Money fo…

News

“Change is good; change facilitates growth.”

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Volunteer for the RKD Community

Whether you’re directly or indirectly affected by rare kidney disease, you can become a hero for those who need it. There are several ways to get involved: Learn more how you can support the RKD community, and help us build a better world for everyone touched by these diseases.

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