Nephcure Kidney International

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 is the only kidney organization squarely focused on nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. We push rare kidney disease (RKD) research and care forward, while connecting patients, families, healthcare providers, government agencies, industry partners, and other key stakeholders so everyone affected by RKD can thrive.

Since our founding, NephCure has invested more than $40 million in kidney disease research. We’ve helped create a new reality where patients have access to new treatments, including more than 60 interventional drug trials for rare kidney disease currently in progress.

Intro to Rare Kidney Disease (RKD)
Learn insights into chronic kidney disease (CKD) verses rare kidney diseases (RKD), including detailed information on different types of RKD, management of end-stage kidney disease, treatment options like dialysis and kidney transplants, pediatric care considerations, and practical guidance for those newly diagnosed with RKD.

While chronic kidney disease (CKD) casts a wide net, affecting 31 million individuals in the United States alone, NephCure takes a closer look — specifically focusing on rare, protein-spilling kidney diseases. Rare, protein-spilling kidney diseases injure the filtering units in the kidney, called glomeruli, which allows protein, and sometimes blood, to ‘leak’ out of the bloodstream and into the urine. These rare kidney diseases (RKD) can happen without cause, be genetic, or have environmental causes. For context, in the United States, a kidney disease is considered rare when it affects less than 200,000 Americans. In Europe, a condition is rare when it affects less than 2,000 people.

What We Do
Our model is different from other rare disease organizations by design. We build bridges between stakeholder groups touched by RKD, creating a network that is stronger than the sum of its parts. Together, we:

* Fund and advance research
* Support patients
* Advocate for change
* Create a community

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.

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.

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.

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.

GET INVOLVED
Learn More: https://nephcure.org/get-involved/

Your involvement can make a tangible difference in the lives of those affected by rare kidney diseases (RKD). NephCure encourages you to get involved in our community by exploring opportunities to volunteer, participating in events, advocating for policy changes, connecting with people local to you, and supporting our mission through donations. Learn more about the various ways you can get involved below.

Explore Volunteer Opportunities
Discover the power of volunteering with NephCure through our Volunteer Hub, your ultimate destination for all things volunteering. Whether your passion lies in fundraising, advocacy, patient support, event planning, or outreach, there’s a meaningful role waiting for you. Check out our volunteer opportunities and be a part of making a difference.

Participate in Advocacy
NephCure is committed to advocating for policies that improve the lives of rare kidney disease patients and their families. Learn more about our advocacy efforts and policy priorities, including our support for the New Era Bill and other legislative initiatives aimed at advancing research and access to care. Join the NephCure Action Network and be a voice for change.

Find Your Local Community
Connect with others who understand the challenges of living with rare kidney diseases (RKD) by finding your local NephCure community. Whether you’re a patient, caregiver, or advocate, joining a local group can provide invaluable support and resources. Use our interactive map to find a community near you and start building connections today.

Contact NephCure:

Mailing Address
For financial-related mail and checks:
NephCure
c/o Gardner, Pierce and Associates, P.C. – Accounting Department 5 Center Avenue, Suite D
Collegeville, PA 19426

For general inquiries:
1299 N. 7th St #16556
Philadelphia, PA 19122

Contact Information:
Phone: 1-866-NephCure (637-4287)
Email: info@nephcure.org