FSGS Awareness Day Puts the Spotlight on a Rare Kidney Disease That May Impact Us

FSGS Awareness Day is observed on June 10, 2026. This day brings more attention to focal segmental glomerulosclerosis (FSGS), a rare kidney disease, and encourages people to stand in solidarity with those who have the condition.

FSGS may not yet be a household name, but for thousands of families, it’s a life-changing diagnosis. Several Black athletes and entertainers have been diagnosed with the condition, including retired NBA player Sean Elliott, Olympic gold medalist Aries Merritt, soccer player Clyde Simms, Grammy-winning producer Brian Kennedy, and acclaimed jazz saxophonist Dayna Stephens.

Their stories highlight the fact that FSGS can affect anyone, regardless of profession, status, or background, but they also highlight the resilience of all patients who continue to push forward despite overwhelming challenges.

What Is FSGS? 

FSGS is a rare and progressive kidney disease that causes scarring in the kidney’s tiny filtering units, called glomeruli, which are responsible for removing waste and excess fluid from the blood. When those filters become damaged, the kidneys gradually lose their ability to function properly. In severe cases, FSGS can lead to kidney failure and the need for dialysis or a kidney transplant.

Symptoms initially tend to go unnoticed, but patients may experience swelling around the eyes or in the legs, unexplained weight gain from fluid retention, or foamy urine caused by excess protein in the urine. Others may develop nephrotic syndrome, a serious condition tied to kidney dysfunction that can also bring high cholesterol and low blood protein levels. In advanced stages, symptoms may mirror kidney failure, including fatigue, nausea, itching, shortness of breath, and loss of appetite.

What Are the Risk Factors? 

While FSGS is a rare condition, it is essential to understand the risk factors associated with it and kidney disease overall. Thirty-two percent of Americans experiencing chronic kidney disease identify as being of African descent, and Black Americans are four times more likely to develop kidney disease compared to other populations.

New Hope for Treating FSGS 

For decades now, the movement to combat focal segmental glomerulosclerosis has grown stronger thanks to the efforts of advocacy organizations like NephCure, along with scientists, healthcare providers, regulators, and industry leaders, as well as patients and their families. While the disease remains difficult to treat, there is a growing momentum in the search for solutions.

A notable recent development is also offering hope. In April 2026, the U.S. Food and Drug Administration approved a new indication for a medication called Filspari (sparsentan) for reducing protein levels in the urine in patients aged eight and older with FSGS who don’t experience nephrotic syndrome.

“After decades without approved treatment options, this decision represents real progress and new hope for patients and families who have carried the weight of this disease for far too long,” said Josh Tarnoff, chief executive officer of NephCure.

“This progress reflects years of dedication from patients, families, researchers, physicians, regulatory partners, industry, and many others across the highly collaborative rare kidney disease community who have worked tirelessly to move the science forward. This approval marks meaningful momentum for everyone living with FSGS.”

Clinical trials are currently underway for several therapies that may help delay the progression of FSGS and slow the onset of kidney failure.

These developments are especially important for Black communities, which continue to face disproportionately high rates of kidney disease overall.

As FSGS Awareness Day is observed, advocates hope conversations around kidney health, early screenings and tests, and access to specialized care will continue expanding, particularly in communities facing the highest risks.

Resources

Advanced Chronic Kidney Disease

U.S. Food and Drug Administration (FDA)

American Kidney Fund

NephCure