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NephCure Wins Bronze Anthem Award for APOL1 Kidney Disease Awareness Campaign 

Honored for NephCure’s APOL1 Kidney Disease Awareness Campaign

KING OF PRUSSIA, Pa. (Nov. 19, 2024) – NephCure is honored to announce its Bronze-level win at the 4th Annual Anthem Awards in the Health category. This recognition highlights the impactful work of NephCure’s APOL1 Kidney Disease Awareness Campaign, a groundbreaking initiative dedicated to raising awareness of this genetic condition predominantly affecting the Black community. 

The Anthem Awards, presented by the International Academy of Digital Arts and Sciences, celebrate outstanding achievements in social impact and purpose-driven work. This year’s competition was the most competitive yet, with over 2,300 entries submitted from more than 30 countries. Additionally, over 33,000 supporters cast 47,000 votes for finalists in the Anthem Community Voice Awards. NephCure’s win underscores its commitment to advancing health equity and awareness on a global scale. 

Patricia McLoughlin, General Manager of the Anthem Awards, praised this year’s honorees, saying, “The winners of this year’s Anthem Awards are truly inspiring, and I am honored to help elevate their impact. At a time of uncertainty, the tireless efforts of the Anthem Awards community provide hope for a better tomorrow.” 

The success of this initiative is credited to the dedicated NephCure team, including Kylie Karley, Director of Marketing & Communications; Imanté Eichelberger, Coordinator of Marketing & Communications; Destiny Lalonde, Content Marketing Manager; Montrez Lucas, Associate Director of Patient Navigation; and Maurice Madden, Director of Stakeholder Engagement. These leaders will accept the award on behalf of NephCure, celebrating their collective efforts to make a meaningful impact. 

About APOL1 Kidney Disease Awareness: 

APOL1 kidney disease is caused by genetic variations in both copies of the APOL1 gene, significantly increasing an individual’s risk of developing kidney disease—by as much as 10 to 30 times. These gene changes occur exclusively in people of African descent, including those who identify as Black, African American, Hispanic, Latino, or Afro-Caribbean. NephCure’s campaign aimed to empower these communities with tools for early detection, education, and preventative care, fostering greater understanding and action.  

Campaign Impact: 

NephCure’s award-winning campaign was anchored by the inaugural National APOL1 Kidney Disease Awareness Day, the first of its kind. The campaign sought to bring attention to the increased risk of kidney disease among individuals of African descent due to genetic variations in the APOL1 gene. 

Through partnerships with more than ten community organizations, including historically Black colleges and universities (HBCUs) and faith-based groups, the campaign brought kidney health awareness directly into the communities most affected. Over 300 individuals were screened for kidney disease during events held across the country. Attendees received educational materials, and more than 100 free T-shirts were distributed to encourage participation and engagement. 

The campaign extended its outreach through email marketing efforts, which saw significant engagement. A “Save the Date” email was delivered to 2,929 recipients, achieving a 30.26% open rate and a click-through rate (CTR) of 2.9%. A follow-up email dedicated to APOL1 Day reached 2,993 recipients, with a 24.17% open rate and a CTR of 2.8%. 

A virtual component of the campaign further amplified its reach. The first APOL1 webinar attracted 100 registrants, with 55 concurrent viewers and 93 total viewers through NephCure’s platform. Additionally, the event was streamed via Soulivity’s website, where it garnered over 89,000 viewers. The APOL1 Day webpage saw a 21% conversion rate, further illustrating the campaign’s effectiveness in inspiring action and awareness. 

About NephCure:  

NephCure’s mission is 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. As NephCure continues its mission, it remains dedicated to setting new benchmarks in health equity, creating opportunities for early intervention, and offering hope to communities in need. 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. 

Looking Ahead: 

This Bronze Anthem Award reinforces NephCure’s commitment to improving the lives of individuals at risk for and living with rare kidney diseases. The APOL1 Kidney Disease Awareness Campaign serves as a powerful example of how community-driven efforts and purposeful partnerships can drive meaningful change. 

For more information about APOL1 Kidney Disease or to support NephCure’s work, please visit https://nephcure.org/.

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PARASOL Project Advances Understanding of Proteinuria in FSGS

BETHESDA, MD. October 14, 2024 – A multi-stakeholder group of rare kidney disease experts aligned around a potential proteinuria-based clinical trial endpoint, balancing biological relevance and trial design considerations. 

PARASOL (Proteinuria and GFR as Clinical Trial Endpoints in Focal Segmental Glomerulosclerosis [FSGS]), an initiative co-sponsored by NephCure, the International Society of Glomerular Disease, the U.S. Food and Drug Administration, the Kidney Health Initiative, and the National Kidney Foundation, convened for the third time in the past ten months at a public scientific workshop held in Bethesda, Maryland on October 7-8, 2024. FSGS is an important cause of kidney failure in patients of all ages and new therapies are urgently needed to reduce the risk of progression. The objective of PARASOL is to advance the understanding and use of proteinuria and eGFR-based surrogate endpoints for accelerated and traditional approval of new treatments for FSGS, thus facilitating the development of new therapies. PARASOL represents the collaborative effort of nephrologists, scientists, patient advocates, biostatisticians, trial sponsors, and regulatory authorities.

At the meeting, the biostatistical team reported an in-depth analysis of 1626 children and adults with FSGS from a combined dataset drawn from multiple glomerular disease networks around the world. Analysis lead Abigail Smith, PhD, Associate Professor of Biostatistics, Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, reported: “The principal finding is that reduction in proteinuria over 24 months is strongly associated with a reduction in the risk of kidney failure, and responder definitions based on thresholds of proteinuria are both biologically plausible and strongly supported by epidemiological data. The finding was consistent in subgroups based on patient age, level of baseline proteinuria, or presence of chronic kidney disease and was validated in a large independent European patient cohort.” Discussion of the findings in an open forum highlighted their broad utility, the biological role of proteinuria in FSGS as a podocytopathy, and implications for clinical trial design. 

“PARASOL is an incredible demonstration by the international nephrology community that through generosity and multidisciplinary collaboration, we can answer fundamental, practical scientific questions needed to inform clinical trial design in rare disease,” said Dr. Laura Mariani, PARASOL Co-Chair and Associate Professor of Medicine (Nephrology) at the University of Michigan.

Laurel Damashek, Executive Director of the International Society of Glomerular Disease, commented, “In under a year, we have taken a giant step forward for FSGS thanks to the dedication and expertise of this collaborative workgroup. We will continue to integrate datasets from additional entities that have generously committed to sharing. Our team hopes to maintain and leverage the PARASOL infrastructure to address urgent questions in other glomerular diseases. PARASOL has shown that sharing data is vital to our collective ability to advance glomerular medicine and improve the lives of people living with rare kidney diseases like FSGS.”

The results of PARASOL will be presented to the full nephrology community on October 25, 2024 at a dedicated session of the annual Kidney Week meeting of the American Society of Nephrology in San Diego, California. Plans for publication in a peer-reviewed journal are also underway.

About PARASOL: PARASOL is a collaborative project sponsored by the U.S. Food and Drug Administration, NephCure, the International Society of Glomerular Disease, the Kidney Health Initiative of the American Society of Nephrology, and the National Kidney Foundation. It was launched in December 2023 to advance the understanding and use of proteinuria and eGFR-based endpoints as surrogate endpoints for accelerated and traditional approval in FSGS by facilitating new analyses of existing data from randomized controlled trials, observational studies, and registries. 

For more information, please contact the organizing committee via https://www.is-gd.org/contact-the-parasol-team.

About NephCure: NephCure is the only organization committed exclusively to accelerating research, education, and support to improve outcomes for individuals living with rare, protein-spilling kidney diseases like Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome. NephCure works to connect patients to clinical trials, advances research for new treatments, and advocates for policies that benefit those with kidney diseases. 

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NephCure Announces the Launch of their New Online Shop to Support Rare Kidney Disease Community  

October 7, 2024: – NephCure is excited to announce the official launch of their new online shop, offering a range of branded merchandise to help continue to raise awareness and support the rare kidney disease (RKD) community. NephCure’s new online store features a variety of items including t-shirts, hoodies, and sweatshirts for both adults and children, designed to help individuals show their support for the (RKD) community and to help create a sense of unity and togetherness.  

All proceeds from the NephCure Shop will go directly to the organization — helping fulfill the organization’s 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. Those who purchase from the NephCure Shop will directly help fund innovative research initiatives, patient education programs, and advocacy efforts aimed at improving patient outcomes and finding a cure. 

By purchasing from the NephCure Shop, individuals will not only help spread awareness of RKD, but also provide crucial funding to ensure continued advancements in treatment options and care. 

To explore the shop and show your support for the kidney disease community, visit: NephCure.org/shop. 

About NephCure:  

NephCure is the only organization committed exclusively to accelerating research, education, and support to improve outcomes for individuals living with rare, protein-spilling kidney diseases like Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome. NephCure works to connect patients to clinical trials, advances research for new treatments, and advocates for policies that benefit those with kidney diseases. 

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NephCure Announces First-Ever IgA Nephropathy (IgAN) Awareness Day on September 26, 2024 

September 3, 2024: – NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare kidney disease, is proud to announce the inaugural IgA Nephropathy (IgAN) Awareness Day on September 26, 2024. The event is specifically dedicated to raising awareness about IgA Nephropathy, a rare and often “silent” kidney disease. 

This day marks a significant milestone for the IgAN community, as NephCure aims to shine a spotlight on this under recognized condition, promote the importance of early diagnosis and proactive treatment, and provide crucial resources for those affected. 

IgAN, also known as Berger’s disease, is a kidney condition that causes inflammation in the kidney’s filtering units, potentially leading to kidney damage and even kidney failure. For many years, IgAN has been a silent adversary, often progressing undetected due to a lack of recognizable symptoms. However, the landscape of IgAN treatment is changing, as new FDA-approved treatment options are now available, offering hope to patients by helping preserve kidney function and potentially delaying or preventing the need for dialysis or transplant. 

Understanding the IgAN Journey
To coincide with IgAN Awareness Day, NephCure is launching a powerful digital campaign titled “Silent but Serious: Understanding IgA Nephropathy.” This campaign will feature compelling stories from four IgAN patients who have navigated the challenges of this condition, as well as several different educational resources and support options.

Join Us for the IgAN Awareness Day Town Hall 
As part of the awareness day events on September 26th, NephCure will host a free, virtual IgAN Awareness Day Town Hall at 7:30 pm EDT. This insightful and empowering event will bring together patients, caregivers, and medical professionals to discuss the latest advancements in IgAN treatment, share patient testimonials, and provide information about the newly launched IgAN Patient Assistance Program. We invite everyone impacted by IgAN to join this important conversation. To register for the webinar, click here. 

Why IgAN Awareness Matters 
IgA Nephropathy often goes undetected in its early stages, with up to 40% of patients showing no recognizable symptoms at the time of diagnosis. Despite its slow progression, there is a growing urgency to treat IgAN, as even patients with lower levels of protein in their urine (proteinuria) are at risk of progressing to end-stage kidney disease (ESKD). NephCure is dedicated to providing the tools and resources needed for patients to take charge of their health, including the newly released IgAN Patient Handbook, which offers a comprehensive guide to understanding and managing the disease. 

The IgAN Patient Handbook also provides practical advice on managing daily life with IgAN, such as valuable dietary tips, lifestyle adjustments, and effective communication strategies with healthcare providers. To download this resource, click here. 

NephCure thanks our generous sponsors, Travere Therapeutics, Alexion, and Calliditas Therapeutics for supporting this event and making IgAN Awareness Day possible.  

For more information about IgAN Awareness Day, to register for the town hall, or to download the IgAN Patient Handbook, click here.

About NephCure: 
NephCure’s mission is 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. 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 new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity. 

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FDA Grants Fabhalta Accelerated Approval for Treatment of IgA Nephropathy in Adults

August 8, 2024: Today marks a promising day for the rare kidney disease (RKD) community: the FDA has announced that Novartis’ drug, Fabhalta (iptacopan), has been granted accelerated approval for the treatment of IgA nephropathy in adults.

As background, the FDA’s accelerated approval program allows for earlier approval of drugs that treat serious conditions and fill an unmet medical need. Fabhalta is granted accelerated approval based on reduction of proteinuria. Further evaluations will determine if the drug slows kidney function decline in IgAN patients.

Over the next several months, Novartis will share more information about this new treatment and explain when and how those who need the drug can access it.

“The FDA’s accelerated approval of Fabhalta represents a critical advancement in addressing the serious and debilitating symptoms of IgA nephropathy. It adds another key option for the rare kidney disease community, as patients respond differently to various therapeutic agents, and we need more options offering different mechanisms of action,” said Josh Tarnoff, NephCure’s CEO. 

“This is a momentous occasion that underscores the significant progress our community continues to make in developing effective treatments for this devastating disease. We know that our work is far from over, but these breakthroughs are critical to ensuring our patient community has increasing access to life-saving treatments. This is not just hope – this is a path paved forward.” 

The continued approval of Fabhalta may be dependent upon the data from Novartis’ ongoing phase 3 APPLAUSE-IgAN study, which evaluates whether Fabhalta slows disease progression as measured by estimated glomerular filtration rate (eGFR) decline over 2 years. The eGFR data are expected at study completion in 2025 and are intended to support traditional FDA approval.

Key takeaways regarding Fabhalta:

  • Fabhalta achieved a 44% proteinuria reduction from baseline in Phase III APPLAUSE-IgAN interim analysis, compared with 9% in placebo arm, demonstrating a clinically meaningful reduction of 38% vs. placebo.
  • Fabhalta is an inhibitor of the alternative complement pathway, activation of which is thought to contribute to the pathogenesis of IgAN.
  • Despite current standard of care, up to 50% of IgAN patients with persistent proteinuria progress to kidney failure within 10 to 20 years of diagnosis.
  • This marks the first approval from Novartis’ renal pipeline, which also includes atrasentan and zigakibart.

Fabhalta is also being developed to treat several other rare diseases beyond IgA nephropathy (IgAN), such as C3 glomerulopathy (C3G), atypical hemolytic uremic syndrome (aHUS), immune complex membranoproliferative glomerulonephritis (IC-MPGN), and lupus nephritis (LN). Ongoing studies are assessing its safety and effectiveness for these conditions to support potential regulatory approvals. The company plans to submit Fabhalta to the FDA and EMA for C3G treatment by the end of the year.   

While we celebrate the FDA’s accelerated approval of Fabhalta, we also continue to move forward to ensure continued access to treatments like this. Our focus now turns to ensuring all patients have timely and equitable access to this new and promising treatment. 

NephCure remains steadfast in our mission to empower people with protein-spilling kidney conditions to take charge of their health, while leading the revolution in research, new treatments, and care.

We are deeply grateful for the incredible support that has helped our community reach this pivotal moment, and we are more committed than ever to the important work ahead. There is still much to be done, but today’s news gives us hope and determination to deliver on our promise to the rare kidney disease community. 

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Kidney Health Advocates from Across the Country Urge Congress to Support the New Era Act During NephCure’s Rare Kidney Day at the U.S. Capitol

NephCure mobilized nearly 70 patients, advocates, and medical professionals to advocate for federal legislation to improve the understanding and treatment of rare kidney diseases.  

Washington, DC, August 8, 2024 – NephCure, the only national kidney organization squarely focused on rare, protein-spilling kidney diseases, hosted its annual Rare Kidneys on the Hill Day in late July to advocate for the New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790), bipartisan federal legislation to improve the lives of rare kidney disease patients. The annual Hill Day included nearly 90 in-person meetings with members of Congress and legislative staff followed by an evening reception for congressional staff, patients, and their families. Sixty-eight advocates, including six physician advocates, from 22 states traveled to Washington, D.C. to participate in the annual event. As a direct result of Hill Day, an additional eight members of Congress across political parties signed on to co-sponsor the New Era Act, bringing the total number of cosponsors to 14. 

NephCure advocates and staff conducted nearly 90 in-person meetings with congressional staff from the U.S. Senate and House of Representatives, more than they had ever held at a Rare Kidneys on the Hill Day before. Advocates met with staff from Congressional offices including Representatives Jefferson Van Drew (R-NJ), Susan Wild (D-PA), Michael Lawler (R-NY), Glenn Thompson (R-PA), Bill Pascrell (D-NJ), and Bill Posey (R-FL).

“The New Era Act gives hope to the kidney disease community, offering a comprehensive approach to early detection, provider education, and innovative treatments that will enhance the quality of life for patients and their families,” said Matthew Johnson, Director, Government Relations and Advocacy at NephCure. “We are incredibly grateful to the dedicated advocates who participated in this Hill Day to urge Congress to pass the New Era Act to help usher in a new era of kidney health. It’s the courage and commitment of patients living with rare kidney diseases, their families, and the physicians who care for them that are the driving force behind NephCure.” 

Introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), the New Era Act is bipartisan legislation aimed at transforming the way our nation approaches kidney health through early detection, research, and innovative treatments to combat kidney disease. The New Era Act seeks to expand access to screening and educational resources, invest in cutting-edge research, and enhance care coordination for patients with kidney disease. By prioritizing diagnosis and innovation, the New Era Act holds the promise of improving the lives of millions of Americans at risk of or living with kidney disease, while also reducing associated healthcare costs. 

You can watch a video of Rare Kidneys on the Hill Day here.

About NephCure

NephCure is the only kidney organization focused on nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. They are working on creating a new reality where more rare kidney disease (RKD) therapies exist, and more patients get the care they need. 

To date, NephCure has invested $40 million into rare kidney disease research, growing the number of interventional drug trials for RKD from zero to more than sixty and counting. Everything Nephcure does is for RKD patients, connecting them and their families to the best care, resources, and community support available. NephCure collaborates directly with government officials and industry partners to pave the way for more clinical trials, drug approvals, and community awareness. By building bridges between patients, families, healthcare providers, and other key stakeholders, they lift everyone up under one common purpose: to find a cure for rare kidney disease.

About the New Era Act 

The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”), introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), has the potential to bring about significant positive changes in how we understand, treat, and study rare kidney diseases (RKD). 

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.

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NephCure Launches National Coalition to Advocate for Policy Solutions that Revolutionize Rare Kidney Disease Care & Improve Patient Outcomes 

We deserve better - New Era Act in Rare Kidney Disease Care - Advocacy

Philadelphia, PA, June 12, 2024 – NephCure, a leading national patient advocacy organization dedicated to accelerating research and finding better treatments for rare kidney diseases, today announced the launch of the New Era Coalition, a first-of-its-kind initiative uniting diverse communities to transform the landscape of research, treatment, and care for rare kidney diseases (RKD). The New Era Coalition brings together patient advocacy groups, medical experts, academic leaders, industry, and other key stakeholders to advance policy and regulatory solutions that move kidney care upstream. The New Era Coalition will advocate for federal and state policies that work to improve outcomes for RKD patients, including the New Era of Preventing End-Stage Kidney Disease Act, H.R. 6790 (“New Era Act”).

“We are proud to spearhead the formation of the New Era Coalition and unite communities to revolutionize rare kidney disease care, improve patient outcomes, and pave the way for a better future for those affected by these diseases,” said Britta Dornan, NephCure Executive Director of Strategic Relations. “For too long, rare kidney disease patients and caregivers have felt powerless and alone, but together we can effect real change. The time has come for policymakers in Washington and states to listen and take decisive action to improve treatment and care for rare kidney disease communities, including by passing the New Era Act this year.” 

More than a dozen influential organizations and patient advocates have joined as New Era Coalition inaugural members to champion policy and advocacy solutions for the RKD community. Alongside NephCure, New Era Coalition members include patient advocates Mary Baliker, Seferiana Day, and Imani Mintz and organizations including the Alport Syndrome Foundation, American Kidney Fund, American Society of Nephrology, Black Women’s Health Imperative, Chronic Disease Coalition, IgA Nephropathy Foundation, International Society of Glomerular Disease, National Kidney Foundation, National Minority Quality Forum, Northwest Kidney Council, and the Rare Disease Diversity Coalition. New Era Coalition advisory members include Arkana Laboratories, Novartis Pharmaceuticals Corporation, Otsuka America Pharmaceutical Inc., Travere Therapeutics, and Vertex Pharmaceuticals.

During the 118th Congress, the New Era Coalition will pursue robust efforts to ensure the passage of the New Era Act. Introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), the New Era Act stems from the community insights gained in 2020 by NephCure and partner organizations from the ‘We Deserve Better: Revolutionizing Rare Kidney Disease Roundtable’ and its resulting white paper.This legislation aims to help people with RKD by finding and treating diseases earlier, enhancing patient and provider education, and conducting more research. The New Era Act would lessen the impact of RKD on people’s lives and reduce costs for patients and the health care system in the long run.

About the New Era Coalition

The New Era Coalition brings together patient advocacy groups, medical experts, academic leaders, industry, and other key stakeholders, to transform the landscape of research, treatment, and care for rare kidney diseases (RKD).

About NephCure

NephCure’s mission is 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. 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 new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

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NephCure Patient & Youth Summit 2024 Unites Rare Kidney Disease Community in San Antonio

The 2024 NephCure Patient Summit and Youth Summit brought together an enthusiastic and powerful assembly of the rare kidney disease (RKD) community, setting a tone of unity and progress. This year’s event took place in San Antonio, Texas, from May 9th – May 11th. The Patient Summit brought together 255 attendees (139 first-time attendees), ranging from patients, caregivers, industry partners, specialists, and more.  

Over the course of the three-day event, our community learned about the significant advancements in the rare kidney disease space, created an environment of support and highlighted the continued need to ensure innovations benefit all patients. 

The Patient Summit kicked off on Thursday with great enthusiasm. NephCure’s Chief Executive Officer, Josh Tarnoff, welcomed attendees with an engaging opening session. The session began with an update on NephCure’s recent activities and outlined the organization’s priorities for the rare kidney disease community. The atmosphere was vibrant, fostering new friendships and strengthening existing bonds within the community. 

Friday, the first full day of the 2024 NephCure Patient Summit, began with an opening session that set the stage for an informative and inspiring event. NephCure’s board president, Michael Levine, welcomed attendees and introduced the Summit theme, leading into the following sessions. 

The importance of a collaborative patient-provider relationship was highlighted in a session led by Dr. Sreedhar Mandayam. He presented “a day in the life” of a nephrologist, emphasizing the role of activated patients in their care. The discussion underscored how patient empowerment is vital in keeping pace with innovations in the rare kidney disease space. 

Attendees participated in physician-led breakout sessions. The sessions explored topics such as RKD Clinical trials, innovations in transplants and the importance of genetic testing.  

In between attending physician-led breakout sessions, there were two panel sessions. The first was a patient and healthcare provider panel about improving patient outcomes through effective patient-provider relationships. The second panel, “Turning Adversity into Action”, featured patients and Texas Sen. Kelly Hancock. This session focused on the power of grassroots activism and government advocacy. The session aimed to inspire attendees to embrace advocacy as a powerful tool for driving change in the RKD community. 

The final day of the 2024 Patient Summit, Saturday, emphasized the importance of strengthening connections within the community. Patients did everything from attending support groups to learning about art therapy and kidney-healthy cooking.  

In the afternoon, key-note speaker, Allison Massari, shared her profound insights on developing a resilience mindset. Drawing from her personal journey of recovery as a burn survivor, she highlighted the essential qualities needed to remain vibrant, alive, and in control of one’s life, even in the face of adversity. 

As the 2024 NephCure Patient Summit concluded, various NephCure staff members discussed upcoming opportunities and programs created by NephCure, providing valuable information on how to stay connected after the Summit. This final gathering offered a sense of community and continuity, ensuring participants felt supported and informed as they returned to their individual lives. 

The 2024 NephCure Patient Summit underscored the importance of community activation, with a shared commitment to ensuring that all rare kidney disease patients benefit from ongoing innovations. Participants left the event inspired and equipped to continue the momentum toward improved access and care. Thank you to everyone who joined and contributed to this significant gathering. 

The Summit’s success was made possible through the generous support of sponsors and the speakers who dedicated their time and expertise to enrich the event. Their contributions were vital in making the Summit an impactful and life-altering experience for all attendees. 

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Introducing a New Destination for the Rare Kidney Disease Community

PHILADELPHIA, May 6, 2024 — NephCure, a leading nonprofit organization dedicated to finding better treatment options and a cure for rare kidney disease, proudly announces the launch of its new website, NephCure.org. The revamped online platform serves as a pivotal hub of information and home for all individuals and families affected by rare, protein-spilling kidney diseases.

With more than 20 years of dedication to the entire rare kidney disease (RKD) community, NephCure has meticulously crafted the new NephCure.org to serve as a comprehensive and user-friendly destination. This updated website moves the organization another step closer to achieving its vision: to build a world where everyone with rare kidney disease has access to new and better treatments, and one day a cure.

“This website represents a significant step forward in our ongoing efforts to empower and support individuals and families affected by RKD. We believe that by providing a centralized platform for vital current information and resources, including our unique matching tools to connect with expert physicians and clinical trials, as well as community engagement, we can drive continued impact and developments within the RKD space,” NephCure CEO Josh Tarnoff said.

The new NephCure.org offers a variety of helpful features and functionalities tailored to meet the diverse needs of the entire RKD community:

The launch of the updated NephCure.org comes at a pivotal time when advancements in research and treatment options for rare, protein-spilling kidney disease are rapidly evolving. By providing this comprehensive online resource, NephCure aims to promote continued research, accessibility to support and information, and ultimately aid in finding better treatments and a cure for everyone affected by RKD.

For more information about NephCure and to explore the new website for yourself, please visit NephCure.org.

About NephCure:

NephCure’s mission is 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. 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 new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

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