{"id":37648,"date":"2026-03-09T13:21:21","date_gmt":"2026-03-09T17:21:21","guid":{"rendered":"https:\/\/nephcure.org\/?page_id=37648"},"modified":"2026-05-29T09:05:36","modified_gmt":"2026-05-29T13:05:36","slug":"fsgs-petition-for-sparsentan","status":"publish","type":"page","link":"https:\/\/nephcure.org\/es\/fsgs-petition-for-sparsentan\/","title":{"rendered":"FSGS Petition for sparsentan"},"content":{"rendered":"
\n
Home<\/a><\/span> \/ FSGS Petition for sparsentan<\/span><\/span><\/div>\n\n
\n\n

Turning Community Voices Into Regulatory Impact<\/h1>\n\n\n\n

Mobilizing the FSGS Community During a Critical FDA Review<\/em><\/strong> <\/strong><\/h3>\n\n\n\n

When a critical moment arrived for the focal segmental glomerulosclerosis (FSGS)<\/a> community, NephCure moved quickly to ensure the voices of patients, caregivers, clinicians, and advocates were heard. <\/p>\n\n\n\nDownload the FSGS Community Petition to the FDA<\/a>\n\n\n

\n
\n
\n\n
\"Headline<\/figure>\n\n\n\n

Introduction<\/strong><\/strong><\/h2>\n\n\n\n

In\u00a0January\u00a02026, the U.S. Food and Drug Administration (FDA) was reviewing\u00a0an application for\u00a0sparsentan\u00a0as a potential treatment for focal segmental glomerulosclerosis<\/a> (FSGS), a rare and progressive kidney disease that can lead to kidney failure.\u00a0\u00a0<\/p>\n\n\n\n

The FDA was expected to make a decision on January 13, 2026. On that date, they issued a major amendment<\/a>, extending the review timeline to allow for more time to evaluate the data. The amendment movedthe FDA\u2019s target decision date to April 13, 2026.  <\/p>\n\n\n\n

Moments like this are critical for the rare disease community. During regulatory reviews, the FDA evaluates clinical trial data, but it also considers the lived experiences of patients and the real-world impact of disease. <\/p>\n\n\n\n

NephCure recognized this as an opportunity, and responsibility, to ensure the voices and experiences of the people living with FSGS were heard and part of the broader conversation. <\/p>\n\n\n\n

Within just four weeks, NephCure launched a community petition, invited individuals across the FSGS, and rare kidney disease, community to share their perspectives on the urgent need for additionaltreatment options, and compiled those voices into a formal submission delivered to the FDA. <\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/section>\n\n

\n\n
\"\"<\/figure>\n\n<\/div>\n\n\n\n
\n\n
\"\"<\/figure>\n\n\n\n

Community Response<\/h2>\n\n\n
\n
\n\n

2,700+ <\/h4>\n\n\n\n

Signatures Submitted<\/p>\n\n<\/div><\/div>\n\n

\n\n

1000+<\/h4>\n\n\n\n

Comments from the FSGS Community<\/p>\n\n<\/div><\/div>\n\n

\n\n

125+<\/h4>\n\n\n\n

Comments from Healthcare Providers <\/p>\n\n<\/div><\/div>\n\n

\n\n

1<\/h4>\n\n\n\n

Unified Message: The FSGS community urgently needs more treatment options<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

\n\n
\"\"<\/figure>\n\n<\/div>\n\n
\n
\n
\n\n
\"\"<\/figure>\n\n<\/div><\/div>\n\n
\n\n
\"\"<\/figure>\n\n\n\n

Read the FSGS Community Petition Submitted to the FDA<\/strong> <\/strong><\/strong><\/strong><\/h2>\n\n\n
<\/div>\n\n\n

The packet NephCure submitted to the FDA reflects the voices, experiences, and hopes of individuals across the FSGS community. <\/p>\n\n\n\n

By sharing their stories, community members helped ensure regulators could better understand the real-world impact of FSGS and urgent need for additional treatment options. <\/p>\n\n\n\nDownload the Full Submission<\/a>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

\n
\n
\n\n
\"\"<\/figure>\n\n<\/div><\/div>\n\n
\n\n
\"\"<\/figure>\n\n\n\n

This Effort was Powered by You<\/strong><\/strong><\/h2>\n\n\n
<\/div>\n\n\n

This submission would not have been possible without the people who stepped forward to share their personal experiences. <\/p>\n\n\n\n

Patients, caregivers, clinicians, researchers, and advocates came together to ensure that the realities of living with FSGS were heard. <\/p>\n\n\n\n

Your voices help drive progress for the entire rare kidney disease community.<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

\n
\n\n
\"\"<\/figure>\n\n\n\n

Petition Comments<\/h2>\n\n\n
\n
\n
\n
\n
\n\n

Brooks B.<\/h3>\n\n\n\n

“A new FDA approved drug for FSGS would make my life as a teenage living with FSGS much easier and more stress-free, the current treatment side effects are very hard to live with at first, and this would be monumental.” <\/p>\n\n<\/div>\n<\/div><\/div>\n\n

\n
\n\n

David R.<\/h3>\n\n\n\n

\u201cThe potential availability of sparsentan, possibly the first FDA approved drug specifically for FSGS, represents something bigger. It means future patients may have a treatment built for their specific disease. Something designed to slow progression before dialysis becomes the only option. Progress matters. Real treatment matters. Hope matters.\u201d <\/p>\n\n<\/div>\n<\/div><\/div>\n\n

\n
\n\n

Gavin T.<\/h3>\n\n\n\n

“Having the opportunity to help extend the life of my native kidneys will allow me to have more time with my wife and kids and hopefully avoid potential complications that comes with either dialysis or transplant.” <\/p>\n\n<\/div>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\nDownload the Petition<\/a>\n\n<\/section>\n\n

\n\n
\"\"<\/figure>\n\n\n
\n\n

Sign up to get NephCure\u2019s latest updates.<\/h2>\n\n\n\nSIGN UP<\/a>\n\n\n
\n