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NephCure, a leading nonprofit organization dedicated to improving the lives of people affected by rare kidney diseases, is proud to recognize the first-ever FSGS Awareness Day on June 10, 2025. This landmark day is dedicated to shining a light on focal segmental glomerulosclerosis (FSGS), a rare and progressive kidney disease that affects all age groups and often leads to kidney failure.
FSGS Awareness Day aims to elevate the voices of patients and caregivers, spotlight the urgent need for earlier diagnoses and better treatment options, and honor the strength of the community navigating this disease every day.
FSGS is characterized by scarring in the kidney’s filtering units, which leads to protein loss in the urine and progressive loss of kidney function. It is a leading cause of end-stage kidney disease in children. Despite its serious impact, FSGS remains largely unfamiliar to the public — making education and advocacy critically important.
NephCure is committed to providing support and educational resources for those affected, while accelerating research and access to care. With continued collaboration between patients, healthcare providers, researchers, and industry, progress is being made toward treatments that can slow progression and improve quality of life.
Join Us: FSGS Awareness Day Town Hall – June 10 at 7pm ET
To mark this important occasion, NephCure will host a free, virtual FSGS Awareness Day Town Hall on Tuesday, June 10 at 7pm ET. The event will feature insights from leading nephrologists Dr. Kirk Campbell and Dr. Rasheed Rastogi, alongside the powerful story of Jamayka Webb, an individual living with FSGS. Together, they will discuss the current landscape of FSGS care, emerging treatments, and how patients and families can advocate for themselves. Click here to register.
Thank you to our corporate partners, Travere Therapeutics, Boehringer Ingelheim, Dimerix, Sanofi, and Apellis, who are working to improve the lives of FSGS patients and families.
To learn more about FSGS Awareness Day, register for the Town Hall, or explore patient resources, visit NephCure.org/fsgs-awareness-day-2025.
About NephCure:
NephCure’s mission is to empower people with rare, protein-spilling kidney diseases to take charge of their health while leading the revolution in research, new treatments, and care. Since 2000, NephCure has invested more than $40 million in kidney disease research and helped transform the treatment landscape through advocacy, education, and support. NephCure is a U.S. tax-exempt 501(c)(3) public charity.
Thank you to our corporate partners
Those that are working to improve the lives of FSGS patients and families.
