FSGS & Rare Kidney Disease

About FSGS & RKD

Breaking down Focal Segmental Glomerulosclerosis

Focal Segmental Glomerulosclerosis (FSGS) is a rare disease that attacks the kidney’s filtering system, causing severe scarring. It is one of the causes of a serious condition known as Nephrotic Syndrome, a kidney disorder that causes the body to pass too much protein in the urine.

Everyone has two kidneys, each holding approximately one million tiny filters called “glomeruli.” Similar to the way a coffee filter keeps coffee grounds in, glomeruli keep valuable cells and protein in the blood. When glomeruli become damaged and hardened “sclerosis,” the tissues become scarred and stiff. So, instead of filtering out waste and excess fluid as they should, proteins begin leaking into the urine (proteinuria), causing fluid to accumulate in the body. Prolonged protein leakage can lead to kidney damage and even failure.

One life-altering disease and a mission to find its cure.

What are some symptoms of FSGS?


Cue Up For A Cure Photo

FSGS Facts

  • More than 5,400 patients are diagnosed with FSGS every year.
  • FSGS is the second leading cause of pediatric kidney failure.
  • About 50% of FSGS patients who do not respond to steroids go into end-stage renal disease (ESRD) each year, requiring dialysis or transplantation.
  • NephCure estimates that there are currently more than 20,000 people living with ESRD due to FSGS.
  • FSGS is associated with up to 20% of all new cases of Nephrotic Syndrome in children each year.
  • Approximately 1,000 FSGS patients a year receive kidney transplants. However, within hours to weeks after the transplant, FSGS returns in up to 30-50% of patients

Since launching the Tampa Pig Jig, we have grown from three clinical trials focused on treatment for FSGS and Nephrotic Syndrome to more than 60. Keep the fire stoked as we fight to ‘Cue up a Cure.