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Effective URL: https://nephcure.org/
Submission: On June 06 via automatic, source certstream-suspicious — Scanned from DE
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Text Content
Skip to content 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 SIGN UP TO GET NEPHCURE’S LATEST UPDATES. SIGN UP Email(Required) Email This field is for validation purposes and should be left unchanged. 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. SEARCH Search for: Search for: