NephCure Celebrates 25 Years Closer to a Cure for Rare Kidney Disease

PHILADELPHIA, Feb. 6, 2025 /PRNewswire/ -- This year marks a monumental milestone for NephCure: 25 years of driving hope, innovation, and progress in the fight against rare kidney disease (RKD).

Founded in 2000 by four families determined to find answers when none existed, NephCure has grown into an international organization, pushing rare kidney disease research and care forward while connecting patients, families, and caregivers to the resources they need.

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.

"For 25 years, we've made tremendous investments in research and landscape changing initiatives and now we are experiencing remarkable progress that once seemed impossible — groundbreaking research advancements, FDA-approved treatments, and a resilient community determined to find a cure," said NephCure CEO Josh Tarnoff.

"We've gone from having little understanding of these rare kidney diseases to now having multiple treatment options, with more on the horizon. That's an extraordinary accomplishment in a short time! But this milestone isn't just about looking back — it's about harnessing our momentum to drive even greater breakthroughs. Once we could only offer hope. We are now in an era where we can offer real options that may stop disease progression."

"We've gone from essentially knowing nothing about these rare kidney diseases to having several treatments options available, and more in the pipeline. That's an incredible achievement in a relatively short amount of time! However, this anniversary isn't just about celebrating how far we've come; it's about rallying our collective energy to keep pushing forward."

NephCure's 25-year journey is marked by transformative achievements, including:

• Supporting the NIH's first clinical study for FSGS patients in 2001, which laid the foundation for understanding the disease today.
• Co-funding the NEPTUNE study in 2009, an effort that provided crucial insights for researchers into nephrotic syndrome.
• Launching the Kidney Health Gateway in 2019, (now our Clinical Trials page) giving those affected by RKD access to clinical trials and the latest treatment options.
• Leading advocacy efforts, resulting in unprecedented attention from policymakers and an increase in federal research funding.

These milestones underscore NephCure's relentless pursuit of a future where RKD patients no longer face uncertainty or isolation.

Although there is much to celebrate, the work is far from over. With FDA approvals for breakthrough treatments on the horizon and exponential momentum in RKD research, the next 25 years hold even greater promise. NephCure is committed to expanding its impact — empowering the next generation of nephrologists, fostering collaborations across industries, and ensuring no patient or family walks this journey alone.

As part of its 25^th anniversary celebration, NephCure invites everyone to explore its visual history, milestones, and future goals at NephCure.org/25th-Anniversary. Together, we can honor the progress made and continue driving meaningful change for those affected by rare kidney disease.

About NephCure
NephCure's mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

Contact: 
Kylie Karley
[email protected]

SOURCE NephCure