Focal Segmental Glomerulosclerosis (FSGS) is one of the most serious and aggressive rare kidney diseases.
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WHAT IS RKD?
Glomerulonephritis is the
third-leading cause of
kidney failure in the U.S.
These diseases are often progressive, difficult to diagnose, and life-altering. For too long, families affected by RKD
have faced uncertainty and limited options.
WATCH VIDEO
Celebrate Rare Kidney Disease’s Next Era with Us.
Rare Kidney Disease’s Next Era: FSGS and Beyond
This event will celebrate how far we’ve come and cast a vision for what’s next.
A CONGRESSIONAL RECEPTION
Now, it’s time for Congress to act
After years of patient advocacy, community resilience, research breakthroughs, hope is finally on the horizon. New therapies are available for some RKD and numerous others are in development, diagnostic tests are improving, and Congressional leaders are recognizing we have to do better for the children and adults living with RKD.
We are entering the Next Era of care for rare kidney disease.
by passing H.R. 1518, the New Era of Preventing End-Stage Kidney Disease Act.
The New Era Act would:
The New Era of Preventing End-Stage Kidney Disease Act is bipartisan legislation, led by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), that aims to
in patients with rare kidney diseases like FSGS, ultimately reducing the burden on patients, families, and the Medicare system.
accelerate diagnosis,
enhance research and education, and prevent costly kidney failure
- Create a national action plan focused on early diagnosis, better treatment options, and improved access to care for patients with rare kidney diseases
- Support innovative pilot programs at HHS that explore new models of care and payment aimed at slowing or halting disease progression
- Coordinate federal agency efforts to prioritize rare kidney disease research, strengthen data collection, and expand patient and provider awareness
What else is in the New Era Bill?
HOSTED BY:
The Rayburn House Office Building is located at 45 Independence Avenue SW, Washington, DC 20515. It's within the United States Capitol Complex. You can take the Blue or Orange line to Capitol South Metro station, turn left on First Street, and then left onto C Street. The Rayburn Building is the third office building on your right.
45 Independence Ave SW, Washington, DC 20515
Room 2075
June 24, 2025
5:00 PM – 7:00 PM
WITH RKD PARTNERS:
RSVP FOR RECEPTION
CELEBRATE THE NEXT ERA IN RARE KIDNEY DISEASE CARE.
We’ve turned a corner in the fight against rare kidney diseases like FSGS. Now it’s time for Congress to turn awareness into action.
Rayburn House Office Building
Rayburn House Office Building
45 Independence Ave SW
Washington, DC 20515
Room 2075
June 24, 2025 | 5:00 PM – 7:00 PM
Rare kidney diseases (RKD) are a group of more than 150 distinct conditions that impact how the kidneys function. Most RKD have no approved treatments and limited public awareness.
Rare Kidney Disease's Next Era:
FSGS and Beyond
Heroes of the New Era and the Next
specifically for FSGS
FDA-approved treatments
5x
more common
the incidence of FSGS in Black patients vs. white patients
50%
risk increase
in end-stage kidney disease within 5 years of diagnosis
billion annually
the estimated direct cost of FSGS alone
$1.8
FIGHTING FSGS AS A CAREGIVER AND ADVOCATE
Kelly Helm
VP of Patient Engagement, EveryLife Foundation for Rare Diseases and mother of a daughter with FSGS
When your child is diagnosed with a rare disease, you don’t just become a caregiver. You become an advocate. Because no one else will fight like you do.”
Kelly Helm is a dedicated kidney disease advocate and caregiver to her daughter, Macy, who was diagnosed with FSGS in 2009 at just three years old. Macy has lived with the disease for over 15 years, experienced kidney failure twice, and received two living donor transplants from family friends.
Kelly turned that personal journey into purpose. She spent more than a decade at NephCure building patient communities, co-leading national voice-of-the-patient initiatives, and advocating for better treatments and policies. Today, she works to ensure the patient and caregiver perspective is front and center in research, policy, and drug development—because families like hers can’t wait.
TURNING A DIAGNOSIS INTO A MOVEMENT
Will Wellman
Founder, Tampa Bay PigJig and inspiration for the HopeWill Foundation
My story isn’t one of healing. It’s a story of choosing hope over darkness, and helping others do the same.
When Will Wellman was diagnosed with FSGS, a rare and aggressive kidney disease, his life changed overnight. After a failed transplant from his mother, he returned to dialysis and faced a future filled with uncertainty. But instead of retreating, Will found purpose, and his friends rallied around him. What started as a backyard BBQ fundraiser, evolved into the Tampa Pig Jig, now one of the city’s largest events supporting kidney disease research.
Through the HopeWill Foundation, Will has helped raise millions for research and supported over 60 clinical trials aimed at finding better treatments for FSGS and related diseases. His story has sparked a movement and reminded others that even in the hardest moments, community and purpose can bring light.
Light refreshments and hors d’oeuvres will be provided.
This is a widely attended event and complies with House and Senate Ethics Committee Rules.
FSGS tried to take my voice, but I turned the silence into purpose.
We deserve more.
DAVID RUSH
Musician and FSGS patient advocate
Featured Patient Advocates
TURNING FSGS INTO A PLATFORM FOR CHANGE
David Rush
Musician and FSGS patient advocate
FSGS tried to take my voice, but I turned the silence into purpose. We deserve more.
David Rush, a hip-hop artist and advocate, was diagnosed with FSGS in 2006 that ultimately led to kidney failure. Despite receiving a transplant from his brother in 2010, the disease returned.
He now uses his voice and platform to raise awareness about rare kidney diseases. David speaks openly about the emotional and physical challenges of FSGS and encourages others to advocate for themselves, seek early diagnosis, and push for better research and policy solutions.