At NephCure, we believe that in order to improve the lives of rare kidney disease patients, we must push forward legislation that specifically addresses the needs of our patient community. Our goal is to raise awareness of rare, protein-spilling kidney diseases such as Nephrotic Syndrome, FSGS, IgAN, Membranous Nephropathy, C3G, and others to champion new and existing legislation and federal funding opportunities to ensure that government policies:
- Represent the rare kidney disease population and account for their unique journeys
- Accelerate the development and approval of new, more effective treatments that improve patients’ quality of life
- Provide the best care for all patients living with rare kidney disease, including those with end-stage kidney disease or post-transplant patients
NephCure Action Network
The newly launched NephCure Action Network (NCAN) is a movement of patients with rare kidney disease and their caregivers, physicians, and partner organizations who all have one goal: to save kidneys and save lives through lasting, legislative change.
We believe that empowered patients, families, and constituents are powerful voices in developing policies and procedures that optimize care and treatment for the rare kidney disease population. We are dedicated to building an advocacy program that moves mountains — and there are exciting movements on the horizon.
By joining this coalition, you’ll be able to attend trainings to learn how to effectively fight for rare kidney disease patients, stay informed on our latest advocacy work, and receive time-sensitive action alerts for opportunities to raise your voice and help policymakers understand what’s important to those directly impacted by rare kidney disease.