Our Impact

Building a Better World for People with Rare Kidney Disease

Until just recently, rare kidney disease was full of “unknowns” — Who’s most at risk? What treatments work best? How do I live with this diagnosis? Our impact lives in finally finding answers to these questions. Since our founding in 2000, NephCure has made enormous progress in advancing research, patient care, and RKD therapies. We’re leading a revolution for rare kidney disease, a reality that wouldn’t be possible without the strength of our community standing behind us.

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Together, We’ve Transformed Lives.

One day in 2000, a group of four patient families, the Antoshes, the Ortons, the Smoklers, and the Stewarts, came together dedicated to making a difference. That moment changed the future of rare kidney disease forever.


At the time of NephCure’s founding, there were zero drugs in research for nephrotic syndrome, FSGS, and other rare kidney diseases, and little understanding of the disease at all.


A little over 20 years later, thanks to our coordinated efforts in fundraising, awareness, and community building, there are now 60+ drugs in clinical trial, creating a new reality for RKD patients everywhere.

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Why We Do What We Do: Hear Joshua’s Story

Meet Joshua Albright, a happy and seemingly-healthy 17-year-old who had just graduated from high school, and on his way to college. His life changed when he was diagnosed with FSGS, a rare and rapidly progressing kidney disease. His future suddenly seemed uncertain. Fortunately, Joshua was able to enroll in a clinical trial for a new FSGS therapy, a reality made possible by NephCure’s ongoing fight for rare kidney disease research.

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NephCure Statistics


NephCure funds invested in research to date


New potential treatments being tested for patients


NephCure Specialist nationwide providing expert care


Patients & families reached yearly through our programs


Annual events bringing together the RKD community nationwide

What’s Currently Happening

Our fight for a cure is happening right now. With more than 60 clinical trials currently in progress—as well as several fundraising and policy initiatives underway—we are constantly pushing forward toward more research, new treatments, and care. 

Current Trials: There are dozens of active clinical trials across hundreds of locations, focusing on various rare kidney diseases.  

Target Populations: Participants include children and adults with specific rare kidney diseases, with some studies focusing on particular age groups or disease subtypes.

Disease Focus: Trials cover a range of different rare kidney diseases, such as IgAN, FSGS, MCD, and more.

Treatment Approaches: Interventions include evaluating investigational drugs, assessing blood processing systems, and studying the effectiveness of existing medications in combination with standard treatments.

Study Types: Trials include both interventional and observational studies, aiming to evaluate investigational drugs, understand disease biology, and gather long-term data.

Geographical Availability: Trials are conducted in multiple locations, spanning coast to coast, offering options for participants across different regions.

See current clinical trials
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Funding Research for the Next Life-Changing Treatment

Year-round, we raise money to invest in research that has the potential to transform the lives of patients with nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. Explore the critical research that we’ve funded, and learn how you can help us push this revolution forward.



Keely P., Patient Parent

“Thank you to all our family, friends, doctors and NephCure for the continuing support as we move forward and pray for a cure.”

Joshua A., FSGS Patient

“When I found NephCure, I felt a sense of community, I felt a sense of hope. In all the research they are doing, they will help future children to eventually have better medications and to be able to find a cure.”

Cameo C., Parent Patient

“When NephCure became part of my journey, it was a big turning point for me mentally. I felt like I had a whole support group, a whole family, outside of my family.”

Teléya B., FSGS Patient

“I’ve always felt very isolated throughout my journey with RKD, the Rare Kidney Connect helped me discover that I don’t have to be… The friends I met and the NephCure team have been very encouraging.”

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Our Impact is Made Possible By People Like You

The size of our impact grows bigger with the size of our community’s support. By giving back today, you can help us create a world where all who are affected by rare, protein-spilling kidney disease are connected to new and better treatments—and one day, a cure.

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