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25 Years Closer to a Cure for RKD
25 years ago, rare kidney disease was a lonely battle fought in the dark. NephCure turned on the light. Since 2000, we’ve brought hope to patients and families—raising awareness, building community, paving the way for breakthrough therapies, and leading the charge toward a cure.
Since 2000, NephCure has fostered groundbreaking research, advanced awareness, and built a thriving community of advocates, expert physicians, and key stakeholders united in one goal: creating a better world for everyone affected by RKD.
Tracing the Journey: Milestones in the Fight Against Rare Kidney Disease
With nowhere else to turn, four families affected by rare kidney disease join forces to create NephCure, the first and only organization focused on nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases.
2001
NIH Launches First Clinical Study for FSGS
In one of the first landmark research programs around RKD, the NIH’s 5-year, $15mm study investigates treatment options for FSGS patients with NephCure’s support. It cements a critical milestone in shaping our understanding of the disease today, paving the way for effective therapies and management.
2009
NephCure and the NIH Jointly Fund NEPTUNE
NEPTUNE, the Nephrotic Syndrome Study Network, launches as a 10-year, $20.25mm study investigating the causes and mechanisms of nephrotic syndrome. It helps researchers better grasp the underlying molecular mechanisms of the disease, which brings us closer to more effective and targeted therapies.
2010
Researchers Discover the APOL1 Gene
Scientists identify APOL1 (apolipoprotein L1) and its variants as playing a critical role in kidney disease, particularly among people of African descent. Opening doors for earlier disease detection, greater health equity, and more targeted therapies, this discovery represents a pivotal moment in nephrology.
2019
NephCure Launches Kidney Health Gateway
This initiative accelerates the development of new treatments for glomerular diseases, like nephrotic syndrome, by increasing awareness of clinical trials and facilitating patient enrollment in these studies. It creates a single, trusted destination for patients to access potential new therapies, while inspiring collaboration between clinicians, scientists, government agencies, pharmaceutical companies, and patients themselves.
2023
The PARASOL Project Kicks Off Worldwide
The PARASOL project creates a collaborative, international effort to study Focal Segmental Glomerulosclerosis (FSGS), aiming to define the relationship between short-term changes in biomarkers like proteinuria and glomerular filtration rate (GFR) with long-term outcomes. It analyzes data on a large scale to help develop treatments for the disease faster.
2025
New RKD Breakthroughs Continue to Emerge
Breakthroughs in research and therapies for rare kidney disease are happening at a pace faster and more frequently than any time in history. Landmark wins like the discovery of anti-nephrin and antiPLA2R open up pathways to new treatment options, while accelerated FDA approvals for RKD treatments like Fabhalta, Filspari, and Tarpeyo offer hope that a cure is more in reach than ever before.
Then v.s. Now
Measuring the Impact of Our History
Where there was no awareness, we sparked conversation. Where there were no communities, we built connections. And where there was no clear path forward, we led the charge toward finding a cure. In 25 short years, we helped change the reality for everyone affected by RKD.
Then
v.s.
Now
No Awareness Around RKD
Before our founding in 2000, little was known about rare kidney disease. Even though it’s considered “rare,” RKD affects hundreds of thousands of people worldwide; that lack of awareness translated to lack of hope for so many who were struggling.
Attention From Patients to Politicians
Our unique cross-stakeholder leadership model expands the conversation across every interest group affected by RKD. From clinicians, to researchers, pharmaceutical companies, public policy makers and more, we’ve raised awareness across the board to create better outcomes for patients.
An Isolating Diagnosis
In the past when you were diagnosed with RKD, you would be lucky to find anyone else who understood firsthand what you were going through. It felt isolating and confusing, like you were alone in a battle that nobody else could fully comprehend.
Support from a Vibrant RKD Community
Over our 25 year history, we’ve helped build a community around RKD, connecting patients, families, and healthcare specialists together in strength. In addition to several online communities, we now have 23 local groups around the country sharing knowledge, empathy, and support. No matter who or where you are, there’s now a way to get involved in creating a better world for people affected by RKD.
Lack of Treatments, Trials & Understanding
A diagnosis of RKD used to be filled with unknowns. The clinical world still knew very little about how the disease worked and how to treat it effectively, often leaving patients and their families unsure about the road ahead.
New Breakthroughs Happening Every Day
We’re now living in a time when more research and clinical breakthroughs are happening around RKD than ever before. Since 2000, NephCure has invested $40mm+ in research funding and organized critical momentum around the disease. With support from our whole community, this push has expanded the potential treatments from zero to 50+, and given patients and families everywhere a reason to hope.
Your Support Isn’t Just Help. It’s Hope.
The enormous progress we’ve made depends on the generous support of our community and donors. Give back today to help us create a world where all who are affected by rare, protein-spilling kidney diseases are connected to new and better treatments—and one day, a cure.
The Future of NephCure and RKD
We have never been prouder to say: There are so many reasons to be excited for the future of rare kidney disease.
A New Era of Clinical Nephrology
The next generation of nephrologists are now taking the helm of clinical care. This cohort has been trained in a new world of understanding around RKD, having greater awareness around innovative treatment options, clinical trials, and proactive clinical care that shows promise for better patient outcomes.
A Boom of FDA-Approved RKD Treatments
Many new FDA-approved treatments for RKD are on the horizon, with some that may even be considered “curative,” something many assumed would never be possible. Treatment plans will also become more tailored for patients as we continue to learn more about RKD and RKD subtypes. Care providers are becoming more adept at using new treatments together to create the best health outcomes for individual patients.
Exponential Excitement for RKD Research
When it comes to energy around RKD research, the train has officially left the station. More physicians and researchers will begin flocking to this field in greater numbers as excitement around research grows. Now, we know more about these diseases and how to treat them, making continued breakthroughs across primary glomerular diseases all but inevitable.
