NephCure Applauds the Introduction of Federal Legislation to Improve Kidney Patient Access to Early Interventions, Improved Diagnostics & Access to Treatments

Washington, D.C., December 15, 2023 – NephCure, a leading national patient advocacy organization dedicated to accelerating research and finding better treatments for rare kidney diseases, today applauded the introduction of the New Era of Preventing End-Stage Kidney Disease Act H.R.6790  in the U.S. House of Representatives. The legislation is championed by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL) and represents a crucial step forward in our nation’s efforts to address rare kidney diseases through research, better diagnostics, and physician and patient education.

The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”) is bipartisan federal legislation that will improve outcomes and quality of life for hundreds of thousands of Americans living with rare kidney disease (RKD) and their families. This legislation will support early intervention, improve access to better treatments, and reduce the physical, psychological, social, and economic impact of RKD through research, better diagnostics, and physician and patient education. The legislation will help mitigate the burden of rare kidney diseases on patients, families, and the health care system, laying the foundation for a new paradigm of proactive and effective kidney disease care.

“Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease,” said Congressman Gus Bilirakis. “Through the establishment of Rare Kidney Disease Research Centers of Excellence and increased provider education efforts, we will empower providers to better identify the signs and symptoms of rare kidney disease, which will lead to improved treatment options and better patient outcomes.”

“Far too many people living with rare kidney disease have trouble finding specialized care providers. Increasing awareness and education is crucial to caring for rare kidney disease patients, which is why I’m so proud to introduce the New Era For Preventing End Stage Kidney Disease Act. This legislation will make critical improvements to the way patients with rare kidney disease, especially those in underserved communities, access and receive care,” said Rep. Sewell.

“NephCure commends Congressman Gus Bilirakis (R-FL) and Congresswoman Terri Sewell (D-AL) for championing the New Era of Preventing End-Stage Kidney Disease Act and efforts to see a future in which improved diagnoses, access to treatments, and patient empowerment converge to reshape the trajectory of rare kidney diseases,” said NephCureCEO Joshua Tarnoff. “This bill can change how we take care of rare kidney disease patients through earlier detection and access to the right treatments, providing rare kidney disease education opportunities to doctors and patients, and allocating money for research. We are proud of the essential contributions the rare kidney disease community played in the development and introduction of the New Era of Preventing End-Stage Kidney Disease Act. We are committed to continue working alongside Congressman Bilirakis and Congresswoman Sewell to pass this important legislation in the 118th Congress.”

The New Era Act: A New Approach to Improve the State of Kidney Care 

  • Reduce Kidney Failure. Mandates the U.S. Department of Health & Human Services (HHS) to evaluate treatment methods that would delay or eliminate the need for dialysis and transplant and provide legislative recommendations to Congress to support its findings.
  • Close the Gap for Underserved Communities. Directs HHS to make recommendations that would improve care in communities that have disproportionate rates of RKD. HHS will study a range of issues relating to early intervention, testing, and treatment, including access to kidney doctors, patient trust of their health care provider, and the utility, impact, and barriers associated with genetic testing.
  • Advance Research and Standard of Care. Creates regional Centers of Excellence on Rare Kidney Disease Research at the National Institutes of Health (NIH) which will support research, public awareness, and resources which could lead to innovative, less invasive treatments and possibly a cure for rare kidney diseases.
  • Enhance Provider Education. Establishes nephrology fellowships and provides continuing education and primary care training on RKD diagnoses and treatment. This training will enhance physician knowledge and increase the number of experts available to patients.
  • Empower Patients & Communities. The New Era Act will support public information and patient education campaigns, promoting informed communities and empowering patients to take charge of their health care journey.

Read the full text of H.R.6790 by clicking here.

NephCure encourages all of its community members to take action now by urging their Members of Congress to support the New Era legislation.

By the Numbers: The State of Kidney Care

  • Top 10 leading causes of death in the U.S. include kidney disease.
  • One in seven adults live with chronic kidney disease.
  • Nine in ten adults with chronic kidney disease are unaware of their condition.
  • The incidence of Focal segmental glomerulosclerosis (FSGS), a rare kidney disease, is around 5 times higher in Black patients when compared to white patients.
  • The annual cost for Medicare to treat kidney failure is $124.5 billion, which is driven by rare and chronic kidney disease.
  • Patients on dialysis spend around 12 hours a week connected to medical devices.

About NephCure

NephCure is a leading national patient advocacy organization dedicated to empowering people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney disease.

NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness


Contact Information:
NephCure Kidney International
Erin Russell

NephCure Kidney International and Local NY Teenager
Sydney Levine Launch MARCHing to Awareness

{Melville, NY, March 2, 2016} – NephCure Kidney International and Sydney Levine, from Melville , NY, will be MARCHing to Awareness for the month of March.  Sydney, 15, rang the closing bell at the NYSE yesterday to kick off her month long drive to promnote awareness of  chronic kidney disease.  Sydney’s brother, Matthew, 12, has Focal segmental glomerulosclerosis (FSGS), a rare kidney disease for which there is no cure.

FullSizeRenderMARCHing to Awareness is a campaign aimed at promoting f National Kidney Disease Awareness Month and will target a different activity each day of the month.  Yesterday, March 1, Sydney spoke in front of the Suffolk County Legislature and rang the NYSE closing bell.

“Academics aside, I wanted to express my admiration for Matthew in the way he conducts himself.  In spite of his condition, his positive attitude never waivers.  I cannot remember the last time I didn’t see him with a smile on his face.  Many kids would use his condition as a crutch or an excuse; he appears to use it as a motivator.  I, for one, am inspired by this. I hope this month is just a start to finding a permanent solution to what Matthew and other kids like him are going through,” Chris Regini, Matthew and Sydney’s science teacher.

For more information, please visit or search #KidneyAwarenessMonth

NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure.


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