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NephCure, a leading nonprofit organization advocating to ensure that all individuals with rare kidney disease have equitable access to the care and treatments, is proud to celebrate FSGS (focal segmental glomerulosclerosis) Awareness Day on June 9th, 2026.
This day is dedicated to raising awareness of FSGS, a rare kidney disease characterized by dysfunction in the part of the kidney that filters blood (glomeruli). FSGS affects individuals of all ages, often progressing silently until significant kidney damage has occurred. By raising awareness, we aim to empower patients, support caregivers, and advance research toward better treatments and, ultimately, a cure.
FSGS is most prevalent in African Americans, who are five times more likely to get FSGS in comparison with the general population. FSGS is also a leading cause of end stage renal disease (ESRD) in children; FSGS is associated with up to 20% of all new cases of nephrotic syndrome in children each year.
Despite the prevalence of FSGS, many patients still face delays in diagnosis, limited disease awareness, and barriers to specialized care.
This FSGS Awareness Day is especially meaningful. Thanks to decades of advocacy from the rare kidney disease community, just two months ago, the U.S. Food and Drug Administration (FDA) approved Travere Therapeutics’ drug sparsentan (FILSPARI) for FSGS. This is the first-ever FDA-approved treatment option for people living with FSGS, signaling a major step forward after decades without any approved, disease-specific therapies.
This advancement represents significant progress for patients and families who have long faced limited treatment options and uncertainty about disease progression.
In honor of FSGS Awareness Day, NephCure is highlighting educational programs and resources designed to empower patients, caregivers, and healthcare providers with accessible, up-to-date information. Featured resources include:
Recommended FSGS Resources
As new FDA-approved therapies for FSGS become available, NephCure is committed to sharing resources that may help patients and their families better navigate access, affordability, and treatment support. There are several programs available that may assist eligible individuals with medication costs and other treatment-related needs:
- The Assistance Fund (TAF) is an independent nonprofit that provides financial assistance to eligible patients facing high medical out-of-pocket costs. TAF’s Focal Segmental Glomerulosclerosis (FSGS) Financial Assistance Program may help cover expenses related to FDA-approved FSGS treatment. To learn more, visit https://enroll.tafcares.org/.
- Eligible patients prescribed sparsentan (FILSPARI) may have access to support services through Travere TotalCare. This program offers resources designed to help patients understand the treatment process, connect with nurse educators, explore financial assistanceoptions, and more. To learn more, visit https://traveretotalcare.com/filspari/.
Get Involved
NephCure invites everyone to spread awareness on social media by downloading and sharing its FSGS Awareness Day social media toolkit. This toolkit allows the public to share awareness graphics about FSGS across social media channels on June 9th, 2026. By tagging NephCure (@NephCure), supporters and patients can help amplify powerful stories and expand reach of the FSGS community.community.
To learn more about FSGS Awareness Day, and NephCure’s FSGS awareness efforts, please visit NephCure.org/fsgs-awareness-day-2026/.
Thank you to our generous corporate sponsors, who are our valued partners for FSGS Awareness Day: Travere Therapeutics and Amicus Therapeutics.
About NephCure
NephCure’s mission is to ensure that all individuals with rare, protein-spilling kidney disease have equitable access to the care and treatments that offer them the best kidney health outcome possible. 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.
