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EN
EN ES
RESOURCES
/
FIND A SPECIALIST
/
CONTACT
* Intro to RKD
* Overview
* Types of RKD
* Navigating New Diagnosis
* Pediatric Care
* End-Stage Kidney Disease
* Dialysis
* Kidney Transplants
* Support
* Patient Navigation Services
* Online Patient Community
* Patient Stories
* Support Groups
* Resources
* Managing RKD
* Find a Specialist
* Clinical Trials
* Treatment Options
* RKD & Mental Health
* Diet and Nutrition
* Genetic Testing
* About
* Our Impact
* Funded Researchers
* What We Do
* Team
* Current Partnerships
* News
* Contact Us
* Get Involved
* Volunteer
* Events
* Advocacy
* The NephCure Action Network
* NephCure Policy Priorities
* New Era Bill
* Find Your Local Community
* Ways to Give
DONATE
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.
GET INVOLVED WHAT WE DO
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 HERE
– +
Find 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 SPECIALIST
– +
Clinical 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 TRIALS
– +
Get 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 Support
FOR 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 US
BECOME A VOLUNTEER
Our volunteers help the 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 disease to take back their health.
GET INVOLVED
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 disease are connected to new and
better treatments—and one day, a cure.
GIVE TODAY
STORIES 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…
Read More
“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…
Read More
“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….
Read More
“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
RESOURCES FOR RARE KIDNEY DISEASE
Video
PLANT-BASED DIET AND KIDNEY DISEASE
Video
MENTAL HEALTH PATIENT AND CAREGIVER PANEL
Video
NEWLY DIAGNOSED PARENTS – NEPHROTIC SYNDROME 101
Educational Materials
SCHOOL ACCOMODATIONS
ALL RESOURCES
THE LATEST EVENTS & NEWS
Patient Program
NEPHCURE ADULT SUPPORT GROUP
June 13
Fundraiser
CHRISTOPHER HULL MEMORIAL GOLF OUTING
June 17
ALL EVENTS
News
STUDENTS AND TEACHERS THROW PIES TO RAISE MONEY FO…
July 29, 2014
News
“CHANGE IS GOOD; CHANGE FACILITATES GROWTH.”
August 8, 2014
ALL NEWS
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INTRO TO RKD
Overview
Types of RKD
Navigating New Diagnosis
Pediatric Care
End-Stage Kidney Disease
SUPPORT
Patient Navigation Services
Online Patient Community
Patient Stories
Support Groups
Resources
MANAGING RKD
Find a Specialist
Clinical Trials
Treatment Options
RKD & Mental Health
Diet & Nutrition
Genetic Testing
LEGAL
Careers
Privacy Policy
Policies & Disclaimers
Financials
ABOUT US
Our Impact
What We Do
Team
Current Partnerships
News
Contact Us
GET INVOLVED
Volunteer
Events
Advocacy
Find your Local Community
Ways to Give
OUR MISSION
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.
FIND US ON
© Copyright 2024 NephCure, Inc. All rights reserved worldwide. NephCure, and the
logo, are federally registered trademarks of NephCure, Inc.
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