#United States #Philadelphia #NephCure #Rare Kidney Disease #FDA Treatments

NephCure: A Milestone in the Fight Against Rare Kidney Disease

In 2025, NephCure celebrates an incredible milestone: 25 years dedicated to advancing the understanding and treatment of rare kidney diseases (RKD). Founded by four passionate families searching for answers to a condition that previously lacked clarity, NephCure has transformed into an international organization dedicated to progression in RKD research and patient support.

A Visionary Beginning

NephCure's journey began in 2000 when these families united over a common goal. Initially, there was limited understanding of rare kidney diseases and almost no treatment options available. The founders understood that collective action was necessary to spark change and instill hope for those affected.

Landmark Achievements

Over the past 25 years, NephCure has made significant strides that include:

• - Clinical Research Initiatives: In 2001, NephCure facilitated the first clinical study for patients with Focal Segmental Glomerulosclerosis (FSGS), which laid the groundwork for future research into day-to-day management and understanding of the disease.
• - Funding Key Studies: By co-funding the NEPTUNE study in 2009, NephCure helped pave the way for essential insights into nephrotic syndrome, evolving the landscape of kidney disease research.
• - Resource Accessibility: The launch of the Kidney Health Gateway in 2019 enabled patients to access vital clinical trial information and emerging treatment options, a resource now pivotal for countless families.
• - Advocacy Efforts: NephCure's advocacy efforts have attracted federal attention, resulting in a significant increase in research funding directed towards RKD.

These initiatives not only showcase NephCure's commitment to research but also emphasize its role in bringing together patients, caregivers, and medical professionals in the fight against kidney disease. As CEO Josh Tarnoff remarks, “We’ve transitioned from having little knowledge to innovative treatments now available, which is an extraordinary feat in such a brief period!”

Future Aspirations

Despite the successes, NephCure emphasizes that the journey is far from over. There's an optimistic anticipation surrounding upcoming FDA approvals for groundbreaking treatments and the advancing research landscape. The next 25 years promise to be even more transformative. NephCure pledges to continue enhancing its impact by:

• - Empowering Nephrology: Training and encouraging new nephrologists and researchers to drive innovative treatments.
• - Inter-Industry Collaborations: Fostering partnerships across healthcare and research sectors to expedite the development of new methods and medicines.
• - Community Support: Ensuring no patient or family contends with RKD alone; continued efforts will focus on building a supportive community.

Celebrate the Progress

In honor of this incredible anniversary, NephCure encourages everyone to explore its rich visual history, significant milestones, and future objectives via NephCure.org/25th-Anniversary. Together, we honor the achievements that have been made and reinforce the ongoing commitment to drive meaningful change for individuals affected by rare kidney diseases.

About NephCure

NephCure's mission is steadfast: to empower those impacted by rare, protein-spilling kidney diseases to take charge of their health. Since its inception, NephCure has invested over $40 million in research and has helped establish a robust framework for developing new treatments, including more than 60 drug trials aimed at treating rare kidney diseases. As a recognized 501(c)(3) public charity, NephCure continues to lead the charge in kidney health advocacy and innovation.

This 25th-anniversary celebration serves not only as a reflection of progress but as a call-to-action for everyone to be part of the journey toward a future where living with RKD is no longer a struggle.