Creating a better world for everyone affected by rare, protein-spilling kidney disease
Rare kidney disease (RKD) touches thousands of lives across the globe every day. NephCure is shaping the future of RKD by empowering patients to take charge of their health, while leading the revolution in research, new treatments, and care. Together, we’re helping everyone affected by RKD thrive—and each day, getting one step closer to a cure.
Diagnosed with a rare, protein-spilling kidney disease? You’re not alone.
If you or a loved one is coping with FSGS, IgA nephropathy, or another nephrotic syndrome, the path forward doesn’t always seem clear. No matter where you are in your journey, NephCure is here to support you, and connect you with the right tools, resources, and care.
Newly Diagnosed
Newly Diagnosed?
For so many people, coping with a recent diagnosis of rare kidney disease means feeling afraid, worried, or even alone. Take back your health and your hope by understanding your disease. We’ve compiled these introductory resources to help get you started.
START HEREFind a Specialist
Find a Specialist
The understanding of rare kidney disease evolves every day. To provide the best care possible, NephCure Specialists stay on the cutting edge of the latest research, treatment options, and clinical trials, while sharing resources with the RKD community. Better care is only a click away.
FIND A SPECIALISTClinical Trials
Explore Treatments Currently In Trial
The world of RKD therapies is evolving fast. As scientists and medical professionals learn more about rare, protein-spilling kidney diseases, patients everywhere gain access to clinical trials for the best care possible and latest treatment options. Learn more to see if you or a loved one would be a good fit for one of the current trial opportunities.
SEE CLINICAL TRIALSGet Support Now
Get Support Now
Not sure where to begin? For more than 20 years, NephCure has helped RKD patients and their loved ones navigate the ins and outs of these challenging diseases. Reach out today and we’ll welcome you into our community, guiding you to the resources you need.
Get SupportFor Rare Kidney Disease. For a Brighter Future.
Since 2000, NephCure has led the charge in creating a better reality for everyone affected by RKD by funding and advancing research, supporting patients, advocating for change, and creating a community. Learn more about the history, mission, and team behind our organization.
ABOUT USBecome a Volunteer
Our volunteers help the Rare Kidney Disease (RKD) community thrive while advocating for important awareness and change. Explore open volunteering opportunities that need your support, and join us in our mission of empowering people with rare, protein-spilling kidney diseases to take back their health.
GET INVOLVEDYour 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.
GIVE TODAYStories From Patients & Families
Keyaira S.
At the age of 11, Keyaira was diagnosed with Nephrotic Syndrome. Before being diagnosed, she was a healthy child. One day, she woke up with puffiness around her eyes…
"After this storm in our life, NephCure is like a rainbow giving us hope and has also been an enormous reason for Sean’s continued health despite his RKD diagnosis and its challenges. I am overwhelmed by all the gifts NephCure has brought to our life and that NephCure is Sean’s team now!"
Diane C.
Patient Parent
Macy H.
Macy was diagnosed at the age of three with Nephrotic Syndrome in 2009, when she presented with swollen eyelids. Initially, she was misdiagnosed with allergies, but eventually the swelling spread…
"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."
Joshua A.
FSGS Patient
Sean C.
Sean Converse is a 19-year-old Sophomore studying Communications at Saint Anselm College in Goffstown, New Hampshire. Sean was diagnosed with IgA Nephropathy (IgAN) after battling….
"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
