Two New FDA-Approved Treatments for RKD

TRUTAKNA® (atacicept) has been FDA approved for IgAN, click to learn more. FILSPARI® (sparsentan) has also been FDA approved for FSGS and more information is coming soon. Please visit our Patient Navigation tool for support.

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Navigating Nutrition in Protein-Spilling Kidney Disease

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This session will explore practical nutrition strategies for individuals living with protein-spilling kidney diseases. Topics will include sodium, fluids, protein, potassium, phosphorus, and how nutrition needs change as kidney disease progresses or dialysis begins.

Attendees will also learn about common nutrition-related side effects and food interactions associated with immunosuppressive medications. The presentation will emphasize individualized nutrition care and practical approaches that support kidney health while maintaining quality of life.

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Cardiovascular Health & Rare Kidney Diseases (RKD)

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Learn about the important connection between cardiovascular health and rare kidney diseases in this educational session. Gain a better understanding of how these conditions are related, why heart health matters, and key considerations for managing your overall well-being. Whether you’re a patient, care partner, or healthcare professional, this session provides valuable information to help you stay informed and engaged in your care.

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Step by Step: The Path to Renal Transplant

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For many people living with ​rare kidney disease, transplant is part of the conversation, but the process can feel unclear or far away. In this session, a transplant nephrologist and a Living Donor and Paired Donation Coordinator will walk you through what actually happens at a transplant evaluation, from what to bring to what questions to ask.

You will also learn about living donor transplant, including how paired donation and the National Kidney Registry work to find matches when a direct donation is not possible. Whether you are early in the conversation or already moving toward listing, this session will help you understand what the path looks like.

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Navigating Healthcare Systems & Support Programs

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Living with kidney disease often means navigating multiple providers, complex treatments, and insurance challenges. In this session, Adria Goldman Gross, FIPC, shares practical tools to help you take control of your care.

Learn how to work with case managers and patient navigators, prepare for appointments, organize medical records, appeal insurance denials, understand your rights under the ADA and FMLA, and navigate Medicare coverage. You’ll also discover resources and support to help you advocate for yourself with confidence.

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Your Journey to Parenthood with Rare Kidney Disease: Navigating Pregnancy and Family Planning

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The session, Your Journey to Parenthood with Rare Kidney Disease, discusses the impact of rare kidney diseases on fertility, pregnancy, and reproductive health.

This session also highlights the importance of early counseling and individualized pregnancy planning, discusses contraception, genetic considerations, and family-building options, and helps patients recognize how pregnancy can affect kidney health and how kidney disease may affect pregnancy outcomes.

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Empowering Students with Kidney Disease

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Empowering Students with Kidney Disease covers educational, developmental, and mental health aspects for families of K-12 students with kidney disease.

Dr. Doyle’s research and advocacy focuses on living with rare and chronic health conditions across the lifespan, with a special interest in emerging adulthood and the transition from pediatric to adult-oriented care.

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Emotional Tools for Patients and Caregivers Navigating Relapse

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Living with a rare kidney disease is linked to higher rates of anxiety, depression, and chronic stress—especially during relapse and periods of uncertainty. Yet the emotional impact of long-term illness often goes unaddressed in medical care.

Still Standing is an experiential session for patients and care partners that combines clear, research-informed insights with practical tools. Drawing on health psychology, trauma-informed care, and nervous system science, participants will learn how ongoing medical stress affects both mind and body—and how to respond in ways that support resilience over time.

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A First for FSGS Patients: What the sparsentan Approval Means for You

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During this live discussion, moderated by NephCure’s COO Lauren Eva and CEO Josh Tarnoff, leading physicians Drs. Kirk Campbell, Laura Mariani, and Howard Trachtman walked through what this sparsentan FDA approval means for the FSGS community. They also discussed who may benefit and what patients and families should know as they navigate next steps.

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Update on FDA Decision About Sparsentan for FSGS | NephCure Town Hall

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The U.S. Food and Drug Administration (FDA) has been reviewing an application for FILSPARI (sparsentan) for the treatment of focal segmental glomerulosclerosis (FSGS). The initial date for the FDA to make a decision on this drug was January 13, 2026. On that date, the FDA issued what is called a major amendment, which means the review process will take more time. NephCure’s virtual townhall answered key questions about this decision and what it means for the FSGS community.

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FSGS Awareness Day Town Hall 2025

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On June 10th, NephCure and its community came together to recognize FSGS Awareness Day—a day dedicated to shining a light on Focal Segmental Glomerulosclerosis (FSGS), a rare kidney disease that causes scarring in the kidney’s and can ultimately lead to kidney failure.

Thank you to everyone who participated, shared resources, and helped amplify this important message. To learn more about FSGS, visit NephCure.org!

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What Is IgA Nephropathy? | NephCure IgAN Awareness Town Hall

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On May 14th, NephCure and its community came together to recognize IgAN Awareness Day—a day dedicated to shining a light on IgA nephropathy (IgAN), a rare kidney disease that causes inflammation in the kidney’s filtering units and can ultimately lead to kidney failure. Thank you to everyone who participated, shared resources, and helped amplify this important message. To learn more about IgAN, visit NephCure.org!

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APOL1 Empowerment: APOL1 Awareness Day Town Hall 2025

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This video explores Apolipoprotein L1 (APOL1), a rare kidney disease that impacts both men and women of any age.

Learn about:
– What is APOL1 and how it impacts patients
– Latest research and treatment options
– Personal stories from APOL1 warriors and more!

Whether you’re living with APOL1, know someone who is, or want to learn more about this often-overlooked condition, this video is for you. Help us spread awareness and hope for those affected by Apolipoprotein L1.

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If you or your loved ones are dealing with APOL1, this is a resource you won’t want to miss!
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