Recent News

Reflecting Organization’s Focus on Rare Kidney Disease

KING OF PRUSSIA, PA (March 31, 2023) — NephCure, formerly NephCure Kidney International, announced Friday a new visual and written brand more distinctly centered around the rare kidney disease (RKD) community they serve. With nearly a year of research and development behind it, this new brand more accurately reflects the nonprofit’s unique position in the RKD space, as well as the explosive growth and transformation the RKD field has seen over the past several years.

NephCure thanks our NephCure Action Network (NCAN) members for helping to make our end-of-year legislative accomplishments possible. As 2022 and the 117th Congress drew to an end, Congress passed its fiscal year (FY) 2023 funding through an omnibus package, which included some hard-fought NephCure policy priorities.

The key to this accomplishment was the collaborative effort between the advocacy team, external partners, and most of all, NephCure’s community of stakeholders — including patient volunteers, families, health care professionals, and researchers. Their meetings, phone calls, letters, and other grassroots activities helped educate lawmakers about rare kidney disease (RKD) and the need for improved funding for research, treatments, and health care services.

Within the omnibus package, focal segmental glomerulosclerosis (FSGS) and nephrotic syndrome were included as eligible conditions to participate in the Department of Defense Peer-Reviewed Medical Research Program (DOD PRMRP).

The DOD PRMRP was established in 1999 to support research across the full range of science and medicine, with an underlying goal of enhancing the health, care, and wellbeing of military service members, veterans, retirees, and their family members. It continues to serve as an additional avenue for accelerating critical research on rare kidney diseases for the development of lifesaving treatments for patients.

The omnibus package also included more than $120 billion to fund initiatives supported by NephCure, including organ transplantation, chronic disease education, and minority health and health disparities, among others.

In addition to these wins, two sections taken from the New Era for Preventing End-Stage Kidney Disease Act, which was introduced in Congress last year, were also included and enacted into law!

In the first section, “Diversity in National Institutes of Health (NIH) Kidney Disease Research Populations,” the Appropriations Committee directs the NIH to submit an update on its research related to kidney disease, including research focusing on health disparities in the prevention, diagnosis, and treatment of kidney disease among racial and ethnic minority populations, in the FY 2024 Congressional Justification.

The second section, “Rare Kidney Diseases in Health Equity Initiatives,” requests the United States Department of Health and Human Services (HHS) to provide an update on disparities in kidney care and the inclusion of rare kidney diseases in policies and programs aimed at eliminating health disparities in communities of color. The HHS must also submit this update in the FY 2024 Congressional Budget Justification.

Submitting these budget justifications ensures that the agencies are being held accountable for the funds they were given.

Congress also requested that both the NIH and HHS provide updates in specific program improvements in the FY 2024 Congressional Budget Justification on disparities in kidney care and the inclusion of rare kidney diseases in policies and programs aimed at eliminating health disparities in communities of color. NephCure and its partners will be closely monitoring implementation of funding for these programs in the coming months.

NephCure’s advocacy team is currently working with the new members of Congress and other organizations to prepare our policy priorities. Stay tuned for a robust grassroots effort engaging members in various activities, including our second annual Rare Kidney Disease Week this July.

Once again, we thank our community for your commitment and support to helping advance legislative and policy priorities that would improve the lives of those living with rare, protein-spilling kidney disease.

You can learn more and join the NephCure Action Network here. NephCure encourages its members to spend time getting to know their representative and senators.

• Regulating blood pressure and fluid levels.
• Balancing minerals in the blood stream.
• Filtering out waste materials and removing waste from blood.
• Directing the production of red blood cells.

• High blood pressure
• High cholesterol
• Foamy or bubbly urine
• Puffiness around the eyes
• Fatigue
• Nausea
• Loss of appetite
• Trouble sleeping
• Frequent urge to urinate
• Blood in the urine
• Feeling faint or dizzy
• Swelling in the ankles and feet
• Pressure when you urinate

Today marks an incredibly promising day for the rare kidney disease (RKD) community: the FDA has announced that the drug FILSPARI (sparsentan) has been granted accelerated approval for the treatment of IgA nephropathy in adults.

The FDA’s accelerated approval program allows for earlier approval of drugs that treat serious conditions and fill an unmet medical need. FILSPARI has been granted accelerated approval based on reduction of proteinuria. It is not yet known if the drug slows kidney function decline in IgAN patients.

Over the next several months, Travere Therapeutics, the company that developed FILSPARI, will share more information about this new treatment and explain when and how those who need the drug can access it.

“This is the moment we’ve all been working toward. FILSPARI’s FDA approval for IgA nephropathy is monumental for the entire rare kidney disease community. Today marks the start of a new era for the treatment of RKD — it is a testament to the research community’s and Travere’s commitment to our patients,” said Josh Tarnoff, NephCure’s CEO.

“Our collective community is incredibly proud to reach this point, but we know the next phase of our vital work now begins: ensuring those who need this drug have access to it in time to save their kidneys. We’ve waited so many years for this treatment. Today’s FDA approval provides a beacon of hope that more needed new treatments are likely to be available soon.”

The continued approval of FILSPARI may be dependent upon the data from Travere’s ongoing phase 3 PROTECT study. This study evaluates the drug in more than 400 patients with persistent proteinuria. After 36 weeks of treatment, patients receiving the drug achieved a nearly 50% reduction in proteinuria.

While this is a new era for RKD patients and their families, we know that we still have a long way to go. FILSPARI is also being studied in FSGS patients, and it could be approved for the treatment of FSGS within the next year. With more than 60 clinical trial opportunities for RKD patients, even more new treatments are likely to be approved in the near future.

We celebrate today, but we know we have not crossed the finish line yet. We must keep pushing research forward so we can continue to improve health outcomes for RKD patients. As Josh mentioned, we’re now facing a new challenge — ensuring all patients have timely and equitable access to these new and better treatments.

We remain focused on our mission to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care.

We thank you for your incredible support that has helped us get to this day, and we are grateful for your continued dedication to our mission.

KING OF PRUSSIA, Pa. (Feb. 15, 2023) – NephCure is excited to announce the organization’s awareness campaign, ‘On the Rebound: Alonzo Mourning’s Kidney Disease Journey,’ is a Gold Winner in the 2nd Annual Anthem Awards in the Health Nonprofit category.

Chronic kidney disease (CKD) is a national epidemic, with more than 1 in 7 U.S. adults affected. People of color are disproportionately affected by CKD due to genetic risk factors, as well as social determinants of health. APOL1-related kidney disease, caused by a mutation on the APOL1 gene, is an especially aggressive form of CKD—approximately 40% of African Americans on dialysis have kidney failure caused by APOl1.

In highlighting Alonzo Mourning’s personal kidney disease story, NephCure aimed to reach those who are at risk for CKD, raise awareness of rare forms of kidney disease, and educate the public, especially the Black community, about the signs and symptoms of these conditions for earlier diagnoses and treatment.

After creating the video with Mourning in the fall of 2021, NephCure launched a digital campaign in December 2021 in support of their Health Equity Initiative and awareness campaign, sharing the video as well as informational resources to help people better understand their risk and disease management. The campaign was distributed via Instagram, Facebook, and YouTube, and focused on the 5-minute video of Mourning telling his own story of being diagnosed with kidney disease just after playing in the 2000 Olympics. He shares his kidney disease journey, the physical and emotional impact, and his advice for others at risk.

“Since launching this platform in June of 2021, we have seen that social change has emerged as a dominant force in mainstream culture,” said Jessica Lauretti, Anthem Awards Managing Director. “The sheer number, breadth and overall quality of the entries shared with us in the 2nd Annual Awards is a testament to the strength of this growing movement and demonstrates an enduring commitment to the work that is both humbling and inspiring to see. From the war in Ukraine, to protests in Iran and the ongoing battle for equality here at home in the States, the call for change not only perseveres but is a growing global chorus.”

The Gold Anthem Award is accepted by the NephCure team members who led this campaign— Kylie Karley, Director of Marketing and Communications, and Delaney Geraghty, Manager of Marketing and Communications.

“It’s an honor, and incredibly humbling, to be recognized by the Anthem Awards for the work we’ve been doing to raise awareness of the risk for CKD and APOL1-related kidney disease. We are passionate about ensuring equitable kidney health care for everyone, everywhere, and know our work in this space does not end here, but rather only begins,” said Karley.

Winners for the 2nd Annual Anthem Awards will be celebrated at the Winners Celebration on Feb. 27 in New York City. Fans can hear from social impact leaders and listen to their hallmark speeches at www.anthemawards.com.

The Anthem Awards was launched in response to the prevalence social good has taken within the national conversation and cultural zeitgeist in recent years. The 2nd Annual competition received nearly 2,000 entries from 43 countries worldwide. By amplifying the voices that spark global change, the Anthem Awards are defining a new benchmark for impactful work that inspires others to take action in their communities. A portion of program revenue will fund a new grant program supporting emerging individuals and organizations working to advance the causes recognized in the 2nd Annual Anthem Awards.

Anthem Winners are selected by the International Academy of Digital Arts and Sciences. Members include: Nicholas Thompson, CEO, The Atlantic, Christina Swarns, Executive Director, Innocence Project, Zarna Surti, Global Creative Director, Nike Purpose, Maurice Mitchell, National Director, Working Families Party, Lindsay Stein, Chief Purpose Office, Tombras, Jennifer Lotito, President & Chief Operating Officer, (RED), Lisa Sherman, President & CEO, The Ad Council, Emily Barfoot,Global Brand Director Dove, Unilever, Trovon Williams, Senior Vice President of Marketing and Communications, NAACP, Roma McCaig, Senior VP of Impact, Clif Bar, Michelle Egan, Chief Strategy Officer, NRDC, Dinah-Kareen Jean, Senior Manager, Social Innovation, Etsy, Sarah Kate Ellis,President & CEO, GLAAD, Jad Finck, Vice President of Innovation & Sustainability, Allbirds, Christopher Miller, Head of Global Activism Strategy, Ben & Jerry’s, Shayla Tait, Director of Philanthropy The Oprah Winfrey Charitable Foundation.

About NephCure:

NephCure’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, and other forms of rare, protein-spilling kidney disease, and to provide education and support that will improve the lives of those affected by these conditions. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 60 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

About The Anthem Awards:

Launched in 2021 by The Webby Awards, The Anthem Awards honors the purpose & mission-driven work of people, companies and organizations worldwide. By amplifying the voices that spark global change, we’re defining a new benchmark for impactful work that inspires others to take action in their own communities. The Anthem Awards honors work across seven core causes: Diversity; Equity & Inclusion; Education; Art & Culture; Health; Human & Civil Rights; Humanitarian Action & Services; Responsible Technology; and Sustainability, Environment & Climate. Founded in partnership with the Ad Council, Born This Way Foundation, Feeding America, Glaad, Mozilla, NAACP, NRDC, WWF, and XQ.

About The Webby Awards:

Hailed as the “Internet’s highest honor” by The New York Times, The Webby Awards is the leading international awards organization honoring excellence on the Internet, including Websites; Video; Advertising, Media & PR; Apps, Mobile, and Voice; Social; Podcasts; and Games. Established in 1996, The Webby Awards received more than 13,500 entries from all 50 states and 70 countries worldwide this year. The Webby Awards are presented by the International Academy of Digital Arts and Sciences (IADAS). Sponsors and Partners of The Webby Awards include Verizon, WP Engine, YouGov, Brandlive, Canva, NAACP, KPMG,  Fast Company, Wall Street Journal, MediaPost, Podcast Movement, and AIGA.

KING OF PRUSSIA, Pa. (Dec. 12, 2022) — NephCure Kidney International (NephCure) is excited to announce new co-chairs for the organization’s Scientific Advisory Board (SAB): Alessia Fornoni, M.D., Ph.D., and Matthias Kretzler, M.D.

Drs. Fornoni and Kretzler, expert glomerular disease nephrologists who actively serve on NephCure’s SAB, will assume the roles of co-chairs following the term completion of former chairman Martin Pollak, M.D.

“Dr. Fornoni and Dr. Kretzler have been indispensable partners of NephCure and the rare kidney disease research and care community, and we’re honored that they have agreed to lead our SAB,” said Josh Tarnoff, NephCure CEO. “Their combined ‘extensive research bench to bedside care’ experience and expertise have provided tangible progress and hope to the kidney community, an integral part of our mission. We are grateful for their passion and leadership to help push glomerular disease research and treatment forward.”

Dr. Fornoni is a Professor of Medicine and Molecular and Cellular Pharmacology at the University of Miami Miller School of Medicine. She is the Chief of the Katz Family Division of Nephrology and Hypertension and serves as and Director and Chair of the Peggy and Harold Katz Drug Discovery Center. Through her pioneering work on insulin signaling, cholesterol metabolism and sphingolipid-related pathways, Dr. Fornoni uncovered novel pathogenetic mechanisms and therapeutic approaches for glomerular disorders.

Dr. Kretzler is the Warner-Lambert/Parke-Davis Professor of Medicine/Nephrology and Computational Medicine/Bioinformatics at the University of Michigan. For the last 35 years of his life, he has focused his research efforts on studying glomerular failure and finding novel ways to treat it. Dr. Kretzler’s work has helped to redefined glomerular diseases in mechanistic terms. This framework is a driving force to develop and test novel precision medicine strategy for people with kidney disease, and hopefully bring the right drug to the right patient at the right time.

Dr. Pollak, the previous chairman of the SAB, is a leader in the research of the genetic basis of rare kidney disease. His research lab discovered the genetic tie between people of African descent and focal segmental glomerulosclerosis (FSGS), a groundbreaking finding that has helped explain why Black Americans have a higher risk of kidney disease. Dr. Pollak continues working to identify genes involved in the development of FSGS in minority populations. Although he will be stepping down as chairman, Dr. Pollak will continue to sit on the SAB and serve the rare kidney disease community.

Rare kidney disease is experiencing a revolution in research breakthroughs, care, and significantly expanded interest, which has led to NephCure’s responsibilities and programming significantly increasing. The addition of co-chairs reflect this important role to the SAB not only due to the responsibilities hosted in the position, but to help pave a way for new research in the kidney community.

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About NephCure Kidney International

NephCure Kidney International’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, and other forms of rare, protein-spilling kidney disease, and to provide education and support that will improve the lives of those affected by these conditions. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 60 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

What is sparsentan and how is it taken?

Sparsentan is a novel Dual Endothelin Angiotensin Receptor Antagonist (DEARA) being studied as a potential treatment option for  immunoglobulin A (IgA) nephropathy and focal segmental glomerulosclerosis (FSGS). In clinical trials, sparsentan is being given as a tablet or age-appropriate liquid taken by mouth.

What is the next step in the approval process?

The U.S. Food and Drug Administration (FDA) has confirmed the Prescription Drug User Fee Act (PDUFA) target action date for sparsentan in IgA nephropathy is February 17, 2023.

Can you describe the patients in the DUPLEX and PROTECT studies?

DUPLEX and PROTECT are ongoing Phase 3 clinical trials studying the efficacy and safety of sparsentan. The DUPLEX study includes 371 patients, ages 8 to 75 years, with primary FSGS. The PROTECT study includes 404 patients, ages 18 years or older, with IgA nephropathy and persistent proteinuria despite angiotensin-converting enzyme (ACE) inhibitor or angiotensin receptor blocker (ARB) therapy.

Can you explain to our patients how sparsentan reduces proteinuria?

The amount of protein found in the urine (called proteinuria) is seen as a marker of kidney function. Lowering proteinuria levels is associated with better kidney health outcomes. Pre-clinical data have shown that blocking both endothelin type A and angiotensin II type 1 pathways, in forms of rare chronic kidney disease, reduces proteinuria. In the PROTECT study, after 36 weeks of treatment, patients receiving sparsentan experienced a greater than threefold reduction of proteinuria from baseline (49.8 percent) compared to the active control irbesartan (15.1 percent).

How is sparsentan different from other treatment options?

Sparsentan is different from other medications because it is non-immunosuppressive and it is dual-acting (combines two mechanisms of action into one molecule). It selectively blocks the action of two important mediators of progression to kidney failure (endothelin type A and angiotensin II type 1) at their receptors.

Can you give us an update about the use of sparsentan for FSGS patients?

Travere Therapeutics anticipates having topline data from the DUPLEX study, including full two-year estimated glomerular filtration (eGFR) data, in the first half of 2023. The company is planning to pursue traditional approval of sparsentan for FSGS in the United States in 2023 and Conditional Marketing Authorization in Europe.

What’s next for Travere Therapeutics?

Travere Therapeutics is dedicated to working with the rare disease community to identify, develop, and deliver life-changing therapies. In addition to the development efforts for sparsentan in IgA nephropathy and FSGS, the company is advancing pegtibatinase for the treatment of classical homocystinuria, a genetic metabolic disorder that can cause life-threatening thrombotic events. In addition, early research efforts include partnering with leaders in patient advocacy and government research to identify potential therapeutics for Alagille syndrome, a rare genetic disorder that can affect the liver, heart, skeleton, eyes and kidneys.

Where can patients with more questions go to find answers?

For more information, patients should talk to their healthcare provider and can visit travere.com, rkdandme.com, navigateigan.com, or lowerproteinuria.com.

Developed in collaboration with the rare kidney disease community, RKD & Me aims to amplify the experiences of people living with rare kidney disease.

SAN DIEGO, Nov. 15, 2022 – Travere Therapeutics, Inc., the IgA Nephropathy Foundation, and NephCure Kidney International today announced the launch of RKD & Me, a new public awareness campaign that spotlights the real stories of people living with rare kidney disease to amplify their unique lived experiences, educate the public, and empower the newly diagnosed. With first-hand input from the rare kidney disease community gleaned from nationwide listening tours, the RKD & Me campaign further establishes the acronym, RKD, and provides a common space for those living with rare kidney disease to share their experiences on RKDandMe.com.

In a world where millions of people live with chronic kidney disease, commonly known as CKD, it is estimated that only 60-80 per 100,000 people in the United States currently live with rare kidney disease (RKD). Due to low public awareness, people living with rare kidney disease can face challenges in getting diagnosed and finding support.

“Rare kidney disease often presents with unique symptoms or no symptoms and can progress to end-stage kidney disease much faster than other forms of kidney disease,” said Kelly Helm, executive director of patient engagement at NephCure Kidney International. “This makes the experiences of people living with RKD substantially different from those with more common forms of CKD.”  

As part of the nationwide listening tour, the RKD community shared letters they penned to their younger selves recounting their experiences, offering words of advice and encouragement, and emphasizing the need for RKD to be delineated from other, more common kidney diseases. They also shared stories on how RKD intersects with every facet of their lives – including relationships, parenting, career and day-to-day activities.  

“By amplifying the personal letters and stories of the RKD community, the RKD & Me campaign will help people living with RKD learn from the experiences of others and find comfort in camaraderie as they navigate their journeys,” said Bonnie Schneider, director and co-founder of IgA Nephropathy Foundation.

The RKD community’s letters are a focal point of this year’s launch and will continue to shape the multi-year campaign in the future. Anyone with an authentic connection to rare kidney disease is encouraged to submit a letter on RKDandMe.com to support raising awareness of RKD. 

“Through the listening tours and the letters, the RKD community shared about the realities of making space in their lives for rare kidney disease, and they also shared their strength, perseverance, and commitment to making their voices heard,” said Eric Dube, president and CEO of Travere Therapeutics. “Along with our partners NephCure and IgA Nephropathy Foundation, we hope the RKD & Me campaign will provide a much-needed platform that recognizes, celebrates, and elevates the unique experiences of people living with RKD.”

To check out the powerful words of people living with RKD and submit your own letter, visit RKDandMe.com or follow #RKDandMe on social media. 

To learn more about rare kidney diseases and other ways to support people living with RKD, visit IgAN.org and NephCure.org. 

About Travere Therapeutics

At Travere Therapeutics, we are in rare for life. We are a biopharmaceutical company that comes together every day to help patients, families and caregivers of all backgrounds as they navigate life with a rare disease. On this path, we know the need for treatment options is urgent – that is why our global team works with the rare disease community to identify, develop and deliver life-changing therapies. In pursuit of this mission, we continuously seek to understand the diverse perspectives of rare patients and to courageously forge new paths to make a difference in their lives and provide hope – today and tomorrow. For more information, visit travere.com. 

About IgA Nephropathy Foundation 

As the only dedicated patient advocacy group for people affected by IgA nephropathy, the IgA Nephropathy Foundation’s mission is to be a patient-centric organization focused on finding a cure for IgA nephropathy. Using the power of the patient community we are focused on funding research, using patient advocacy to empower our patients, and building a network of support. As a patient-run organization, we will work together with the hope of finding better treatment options and the ultimate cure. By patients, for patients. To learn more, visit www.IgAN.org.

About NephCure Kidney International 

NephCure Kidney International’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases, and to provide education and support that will improve the lives of those affected by these conditions. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 50 interventional drug trials for primary glomerular kidney diseases. To learn more, visit www.NephCure.org.

HOUSTON, TX (August 4, 2022) – NephCure Kidney International (NephCure) is hosting a panel discussion, “Men’s Health: Rare Kidney Disease Across Generations,” during the Black Health Matters Summit and Health Fair on August 6^th in Houston, TX. Black Health Matters, a non-profit focused on improving the health and wellness of Black and BIPOC communities, hosts the largest public health forums on Black Health in the nation. This panel is sponsored by Travere Therapeutics.

The “Men’s Health: Rare Kidney Disease Across Generations” panel includes three Black men, from the NephCure community, from a range of ages and in different stages of their focal segmental glomerulosclerosis (FSGS) journey; four time Grammy-award winning producer, songwriter, and social entrepreneur, Brian Kennedy, NephCure Board member and Kappa Alpha Psi fraternity member, Kevin Mott, and advocate and Georgia State University student, Joshua Albright.

FSGS is a rare and progressive kidney disease that affects Black Americans at rates 4-5 times higher than white Americans. A mutation on the APOL1 gene, found in people of African descent, is associated with one of the most severe forms of FSGS.

“These three NephCure advocates bring an essential voice and awareness to the Black community, especially amongst Black men. There is often a stigma when it comes to discussing men’s health issues. Brian, Kevin, and Joshua each have unique experiences that will shed light on and start a very important dialogue,” Lauren Eva, NephCure’s Vice President of Professional Relations, said.

Each panelist will share their unique story with FSGS and discuss their experience pursuing an accurate diagnosis, navigating treatment options, and their mental health.

Kennedy, Mott, and Albright will also ignite the critical conversation around race-related concerns, the genetic link that increases Black Americans’ risk for kidney disease, and the important early warning signs of kidney disease that everyone, no matter their age or health, should be aware of.

The Black Health Matters Summit and Health Fair builds upon the collective strengths and shared goals of people and organizations seeking to disrupt the current medical establishment through preventative and intentional action that improves the quality of Black life. NephCure is proud to partner with Black Health Matters and Travere Therapeutics and raise awareness about rare, protein-spilling kidney diseases.

The Black Health Matters Summit and Health Fair is both an in-person and hybrid event held on Saturday, August 6^th. To learn more and to register for the event, please visit https://blackhealthmatters.com.

About NephCure Kidney International

NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 40 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

 About Black Health Matters

Black Health Matters (BHM) was launched a decade ago, and is the leading health, wellness and chronic disease interactive digital platform dedicated to improving health outcomes among African Americans.   BHM has collaborated with a wide range of partners, including fraternities, sororities, and faith-based and civic organizations to raise awareness around chronic diseases, mental and physical health, and fitness in the Black community. The organization’s mission is to improve health literacy, which includes addressing health care, health policy, health equity, and health disparities for positive outcomes. For more information go to www.blackhealthmatters.com

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UPDATE (July 22, 2022): NephCure is proud to share the successful results of the first annual Rare Kidneys on the Hill Day, made possible by our dedicated, powerful community of rare kidney disease patients and families. These successes include:

• 127 Congressional meetings attended
  • 62 Senate meetings
  • 65 House of Representatives meetings
• 136 advocate attendees
• 32 states and Washington, D.C. represented
• 2 additional co-sponsors secured for the New Era of Preventing End-Stage Kidney Disease Act

WASHINGTON, D.C. (July 20, 2022) – NephCure Kidney International (NephCure) and the rare kidney disease community celebrate the success of Tuesday’s Rare Kidneys on the Hill Day. Rare Kidneys on the Hill Day, which takes place during NephCure’s Rare Kidney Disease Week, serves as the premier advocacy event for the rare kidney disease community.

Tuesday’s event brought together more than 100 rare kidney disease advocates from 30 states. Together, these advocates participated in more than 121 Congressional meetings where they shared their lived experiences with members of Congress and their staff while stressing the critical need to support H.R. 7506, the New Era of Preventing End-Stage Kidney Disease Act. The bill was introduced in the House of Representatives on April 14, 2022, by Reps. G.K. Butterfield (D-NC) and Gus Bilirakis (R-FL).

As a result of their dedication and efforts, rare kidney disease advocates were able to secure additional and vital co-sponsors for H.R. 7506. NephCure is ecstatic to now count Rep. Susan Wild (D-PA) as a co-sponsor of H.R. 7506 and a new champion for the rare kidney disease community. NephCure looks forward to following up with other members of Congress over the coming weeks to secure their support for this vital piece of legislation.

“The New Era of Preventing End-Stage Kidney Disease Act is a critical and much-needed piece of legislation built by and for the rare kidney disease community,” said Joshua Tarnoff, NephCure CEO. “Our advocates took part in an intensive advocacy training program and took time to understand H.R. 7506. I am proud of the work they’ve accomplished to advocate for the rare kidney disease community.”

Rare kidney diseases contribute to the more than $84 billion spent on treating Medicare beneficiaries with chronic kidney disease and the $36 billion spent on treating people with end-stage kidney disease (ESKD). However, there has been little to no innovation in treatment for kidney disease patients since the 1960s, when dialysis and immunosuppressants became commonly used. There are no FDA-approved treatments for rare kidney diseases, and many patients struggle to find a nephrologist who is well-versed in their conditions and can provide an accurate diagnosis and expert treatment.

The New Era of Preventing End-Stage Kidney Disease Act would help transform care delivery to rare kidney disease patients by increasing community and healthcare provider awareness and education, addressing kidney health disparities in communities of color, and advancing rare kidney disease research.

NephCure thanks Travere Therapeutics, Novartis, Boehringer Ingelheim Pharmaceuticals, Chinook Therapeutics, and Calliditas Therapeutics for their support, which allowed NephCure to bring together and empower the largest virtual gathering of rare kidney disease advocates ever. For more information on H.R. 7506 and NephCure’s advocacy efforts, please visit NephCure.org/NewEraAct.

About NephCure Kidney International
NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 40 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

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KING OF PRUSSIA, PA (July 13, 2022) – NephCure Kidney International (NephCure), a nonprofit focused on finding better treatments for patients suffering from rare, protein-spilling kidney diseases, is proud to collaborate with the Pediatric Nephrology Renal Consortium (PNRC) to provide the Pediatric Glomerular Disease Accelerator Grant Program: Delivering Cures in a Decade.

The Delivering Cures in a Decade grant program will provide small and medium-sized grants to nephrologists and researchers studying pediatric glomerular diseases, beginning this year, and running through 2024. This program aims to fund and accelerate research that will provide insights and evidence to help cure pediatric glomerular disorders.

“The Pediatric Glomerular Disease Accelerator Grant Program is so exciting for our research community! Investigators in pediatric glomerular disorders are not short of innovative ideas and novel approaches to mechanisms of disease and potential therapeutics,” said John D. Mahan, MD, the PNRC Board President. “The gap that this grant program can really address is the current lack of critical seed funding to take these ideas from ‘concepts’ to ‘explored’, and as such lead to new treatments and cure.  We could not be more excited or more committed to this work.”

The NephCure and PNRC collaboration came from a mutual desire to promote and support areas of bench, translational, and clinical research in pediatric glomerular disease.

“We are very hopeful that the NephCure and PNRC Delivering Cures in a Decade grant will provide invaluable insights and lead to changes of how we care for children affected by rare, protein-spilling kidney diseases,” Josh Tarnoff, NephCure CEO, said.

This international grant program is open to any pediatric nephrologist or pediatric nephrology scientist. Applicants do not have to be a member of the PNRC to apply. The total award funds vary, from $10,000-$20,000 small awards to $50,000-$75,000 medium awards. Both NephCure and PNRC will review grant applications, and awardees will be announced in the fall at the PNRC members meetings.

To learn more about the Delivering Cures in a Decade grant program application guidelines, eligibility, deadlines, and review process, visit https://pnrconsortium.org/nki-program/home.

About NephCure Kidney International

NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 40 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

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