{"id":35053,"date":"2025-01-17T11:18:04","date_gmt":"2025-01-17T16:18:04","guid":{"rendered":"https:\/\/nephcure.org\/?page_id=35053"},"modified":"2025-07-17T17:19:19","modified_gmt":"2025-07-17T21:19:19","slug":"gestionando-rkd-4","status":"publish","type":"page","link":"https:\/\/nephcure.org\/es\/25th-anniversary\/","title":{"rendered":"25 aniversario"},"content":{"rendered":"
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Home<\/a><\/span> \/ 25th Anniversary<\/span><\/span><\/div>\n\n
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25 Years Closer to a Cure for RKD<\/h1>\n\n\n\n

25 years ago, rare kidney disease was a lonely battle fought in the dark. NephCure turned on the light. Since 2000, we\u2019ve brought hope to patients and families\u2014raising awareness, building community, paving the way for breakthrough therapies, and leading the charge toward a cure.<\/p>\n\n<\/div>\n\n

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Since 2000,<\/font> NephCure has fostered groundbreaking research, advanced awareness, and built a thriving community of advocates, expert physicians, and key stakeholders united in one goal: creating a better world for everyone affected by RKD. <\/font><\/h2>\n\n<\/div><\/div>\n\n
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Tracing the Journey: Milestones in the Fight Against Rare Kidney Disease<\/h2>\n\n\n\n

With nowhere else to turn, four families affected by rare kidney disease join forces to create NephCure, the first and only organization focused on nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases.<\/p>\n\n<\/div>\n\n

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2001<\/strong><\/h2>\n\n\n
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NIH Launches First Clinical Study for FSGS<\/strong><\/p>\n\n\n\n

In one of the first landmark research programs around RKD, the NIH\u2019s 5-year, $15mm study investigates treatment options for FSGS patients with NephCure\u2019s support. It cements a critical milestone in shaping our understanding of the disease today, paving the way for effective therapies and management.  <\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

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2009<\/strong><\/h2>\n\n\n
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NephCure and the NIH Jointly Fund NEPTUNE<\/strong><\/p>\n\n\n\n

NEPTUNE, the Nephrotic Syndrome Study Network, launches as a 10-year, $20.25mm study investigating the causes and mechanisms of nephrotic syndrome. It helps researchers better grasp the underlying molecular mechanisms of the disease, which brings us closer to more effective and targeted therapies. <\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

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2010<\/strong><\/h2>\n\n\n
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Researchers Discover the APOL1 Gene<\/strong><\/p>\n\n\n\n

Scientists identify APOL1 (apolipoprotein L1) and its variants as playing a critical role in kidney disease, particularly among people of African descent. Opening doors for earlier disease detection, greater health equity, and more targeted therapies, this discovery represents a pivotal moment in nephrology. <\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

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2019<\/strong><\/h2>\n\n\n
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NephCure Launches Kidney Health Gateway<\/strong><\/p>\n\n\n\n

This initiative accelerates the development of new treatments for glomerular diseases, like nephrotic syndrome, by increasing awareness of clinical trials and facilitating patient enrollment in these studies. It creates a single, trusted destination for patients to access potential new therapies, while inspiring collaboration between clinicians, scientists, government agencies, pharmaceutical companies, and patients themselves.<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

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2023<\/strong><\/h2>\n\n\n
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The PARASOL Project Kicks Off Worldwide<\/strong><\/p>\n\n\n\n

The PARASOL project creates a collaborative, international effort to study Focal Segmental Glomerulosclerosis (FSGS), aiming to define the relationship between short-term changes in biomarkers like proteinuria and glomerular filtration rate (GFR) with long-term outcomes. It analyzes data on a large scale to help develop treatments for the disease faster. <\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

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2025<\/strong><\/h2>\n\n\n
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New RKD Breakthroughs Continue to Emerge<\/strong><\/p>\n\n\n\n

Breakthroughs in research and therapies for rare kidney disease are happening at a pace faster and more frequently than any time in history. Landmark wins like the discovery of anti-nephrin and antiPLA2R open up pathways to new treatment options, while accelerated FDA approvals for RKD treatments like Fabhalta, Filspari, and Tarpeyo offer hope that a cure is more in reach than ever before. <\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

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Then v.s. Now<\/h2>\n\n<\/div><\/div>\n<\/div>\n\n\n

Measuring the Impact of Our History<\/h2>\n\n\n\n

Where there was no awareness, we sparked conversation. Where there were no communities, we built connections. And where there was no clear path forward, we led the charge toward finding a cure. In 25 short years, we helped change the reality for everyone affected by RKD. <\/p>\n\n\n

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Then<\/h2>\n\n<\/div><\/div>\n\n
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No Awareness Around RKD<\/strong><\/h3>\n\n\n\n

Before our founding in 2000, little was known about rare kidney disease. Even though it\u2019s considered \u201crare,\u201d RKD affects hundreds of thousands of people worldwide; that lack of awareness translated to lack of hope for so many who were struggling. <\/p>\n\n<\/div>\n<\/div><\/div>\n\n

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Attention From Patients to Politicians<\/strong><\/h3>\n\n\n\n

Our unique cross-stakeholder leadership model expands the conversation across every interest group affected by RKD. From clinicians, to researchers, pharmaceutical companies, public policy makers and more, we\u2019ve raised awareness across the board to create better outcomes for patients.<\/p>\n\n<\/div>\n<\/div><\/div>\n\n

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An Isolating Diagnosis<\/strong><\/h3>\n\n\n\n

In the past when you were diagnosed with RKD, you would be lucky to find anyone else who understood firsthand what you were going through. It felt isolating and confusing, like you were alone in a battle that nobody else could fully comprehend.<\/p>\n\n<\/div>\n<\/div><\/div>\n\n

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Support from a Vibrant RKD Community<\/strong><\/h3>\n\n\n\n

Over our 25 year history, we\u2019ve helped build a community around RKD, connecting patients, families, and healthcare specialists together in strength. In addition to several online communities, we now have 23 local groups around the country sharing knowledge, empathy, and support. No matter who or where you are, there\u2019s now a way to get involved in creating a better world for people affected by RKD. <\/p>\n\n<\/div>\n<\/div><\/div>\n\n

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Lack of Treatments, Trials & Understanding<\/strong><\/strong><\/h3>\n\n\n\n

A diagnosis of RKD used to be filled with unknowns. The clinical world still knew very little about how the disease worked and how to treat it effectively, often leaving patients and their families unsure about the road ahead. <\/p>\n\n<\/div>\n<\/div><\/div>\n\n

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New Breakthroughs Happening Every Day<\/strong><\/h3>\n\n\n\n

We\u2019re now living in a time when more research and clinical breakthroughs are happening around RKD than ever before. Since 2000, NephCure has invested $40mm+ in research funding and organized critical momentum around the disease. With support from our whole community, this push has expanded the potential treatments from zero to 50+, and given patients and families everywhere a reason to hope.<\/p>\n\n<\/div>\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

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Your Support Isn\u2019t Just Help. It\u2019s Hope.<\/h2>\n\n\n\n

The enormous progress we\u2019ve made depends on the generous support of our community and donors. Give back today to help us create a world where all who are affected by rare, protein-spilling kidney diseases are connected to new and better treatments\u2014and one day, a cure.
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The Future of NephCure and RKD<\/h2>\n\n\n\n

We have never been prouder to say: There are so many reasons to be excited for the future of rare kidney disease. <\/p>\n\n\n

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A New Era of Clinical Nephrology<\/h4>\n\n\n\n

The next generation of nephrologists are now taking the helm of clinical care. This cohort has been trained in a new world of understanding around RKD, having greater awareness around innovative treatment options, clinical trials, and proactive clinical care that shows promise for better patient outcomes.<\/p>\n\n<\/div>\n<\/div><\/div>\n\n

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A Boom of FDA-Approved RKD Treatments<\/h4>\n\n\n\n

Many new FDA-approved treatments for RKD are on the horizon, with some that may even be considered “curative,\u201d something many assumed would never be possible. Treatment plans will also become more tailored for patients as we continue to learn more about RKD and RKD subtypes. Care providers are becoming more adept at using new treatments together to create the best health outcomes for individual patients.<\/p>\n\n<\/div>\n<\/div><\/div>\n\n

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Exponential Excitement for RKD Research<\/h4>\n\n\n\n

When it comes to energy around RKD research, the train has officially left the station. More physicians and researchers will begin flocking to this field in greater numbers as excitement around research grows. Now, we know more about these diseases and how to treat them, making continued breakthroughs across primary glomerular diseases all but inevitable. <\/p>\n\n<\/div>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n

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Get Involved<\/h2>\n\n\n\n

25 years of impact, and none of them possible without the community\u2019s support.<\/strong> We\u2019ve made so much progress, but the work is not yet finished. Join our fight to create a better world for everyone affected by RKD.<\/p>\n\n<\/div>\n\n

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NephCure’s Milestone<\/h2>\n\n\n\n

NephCure celebrates 25 years of impact in kidney disease research, advocacy, and patient support. Read the full press release to learn about our journey and vision for the future!<\/p>\n\n<\/div>\n\n

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The Latest Events & News<\/h2>\n\n\n
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NephCure Parent Support Group<\/h2>\n\n
Support Group<\/span><\/div>\n<\/div>\n\n
\nJune<\/span>\n\n15<\/span>\n<\/div>\n<\/div>\n<\/div><\/div>\n\n
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2026 NephCure Patient Summit<\/h2>\n\n
Patient Program<\/span><\/div>\n<\/div>\n\n
\nJune<\/span>\n\n25<\/span>\n<\/div>\n<\/div>\n<\/div><\/div>\n<\/div>\n\n\n
\n\nALL EVENTS<\/a>\n\n<\/div>\n<\/div><\/div>\n\n
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News<\/span><\/p>\n\n

NephCure\u00a0Celebrates FSGS Awareness Day on June 9th, 2026\u00a0<\/h2>\n\n

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News<\/span><\/p>\n\n

From Patient to Advocate: My First Rare Kidneys on the Hill Day<\/h2>\n\n

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Latest Resources<\/h2>\n\n\n
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Sparsentan\u00a0(FILSPARI) for FSGS:\u00a0FAQs<\/h4>\n<\/div>\n<\/div><\/div>\n\n
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Congenital Nephrotic Syndrome & Infantile Nephrotic Syndrome<\/h4>\n<\/div>\n<\/div><\/div>\n\n
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A First for FSGS Patients: What the sparsentan Approval Means for You<\/h4>\n<\/div>\n<\/div><\/div>\n\n
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School Accomodations<\/h4>\n<\/div>\n<\/div><\/div>\n<\/div>\n\n<\/div>\n\n\nALL RESOURCES<\/a>\n\n<\/div>\n\n
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