FSGS Resources, Information, & Community
Focal segmental glomerulosclerosis (FSGS) enters lives often without warning, touching both the young and those in the prime of adulthood. This rare kidney disease affects approximately 7 in 1,000,000 people annually, which includes children and adolescents as well as adults of all ages.
RKD & Me LEARN
A kidney disease diagnosis can feel overwhelming and management can feel complicated.
We provide ways to get your questions answered through our education team.
By sharing your experience, you can help others feel more connected and less alone.
What’s a “win” that’s kept you moving forward?
Play It Forward for RKD
On the first-ever FSGS Awareness Day, a song was released to uplift the RKD community.
Brian Kennedy (Grammy-Award winning artist, producer, and founder of Hits-to-Healing) and David Rush (artist, producer, and motivational speaker) came together for the first time, drawing on their personal experiences with FSGS, and wrote this anthem called "Feel So Good."
Walking a Path of Courage
FSGS creates scarring in the tiny filtering units of the kidneys, progressively affecting their function. For families with young children with the condition, the journey typically begins with alarming symptoms: unexplained swelling around the eyes and ankles, frothy urine, or unexplained fatigue that brings them to medical attention. For adults, the onset might appear amid career building, family raising, or retirement planning—transforming life’s trajectory without permission.
Voices That Inspire: FSGS Stories
Every family’s experience with FSGS carries wisdom that can light the way for others. These community voices remind us that beyond medical terms and treatment plans, there are everyday heroes—both young patients and devoted caregivers—finding strength and meaning in unexpected places.
View full stories from real people
Carla B.Meet Carla, a 55-year-old training manager and life coach whose son is "the love of my life, the light of my life...
Chrystal H.Meet Chrystal, a devoted "volleyball mom" whose daughter Lauren lives with FSGS...
Dan K.Meet Dan, who has lived with FSGS for six years...
Dana L.
See how Dana is Playing It Forward...
Fallon B.“Being diagnosed with this rare kidney disease will take you on a journey you never imagined.”
Jorden A.See how Jorden is Playing It Forward...
Joshua A.See how Joshua is Playing It Forward...
Katlynn W.My journey with rare kidney disease began shortly after one of the happiest moments of my life…
Kelly H.See how Kelly is Playing It Forward...
Kimberly Q.See how Kimberly is Playing It Forward...
Lauren C.Dear Lauren, Hello from your future. It’s me, 39-year-old Lauren. Ancient, right? You’re…
Marc C.Dear younger self, I just want to let you know now that you are stronger than you think. Your…
María L.In this life you have to be strong, yes, oh yes! You are going to have to…
Nick A.Meet Nick, a recently graduated pharmacist who enjoys live music, has a "ridiculous collection of hot sauces...
Robert S.I was 37 the first time my body whispered that something wasn’t right...
Sachet W.Meet Sachet, a private chef who shares her love of cooking and Harry Potter...
Tiffany L.Dear 30-year-old Tiffany, As you progress in life, always remember the mantra: “And…
Tori S.Meet Tori from Pittsburgh, a resilient patient with FSGS and advocate who shares her life with her beloved five-year-old...
A Community That Understands
Your FSGS journey comes with unique challenges, but you don’t have to face them alone. Dedicated advocates stand ready with specialized resources, understanding, and support tailored to both young patients, their caregivers, and adults with FSGS.
NephCure has created a comprehensive network of support specifically designed for the FSGS community. Through educational materials, family support programs, and connections to specialized care, they transform overwhelming uncertainty into actionable knowledge and isolating experiences into shared understanding.
Resources That Guide and Support
Knowledge becomes power when facing FSGS. Explore these specialized resources from NephCure.
