Kevin Schnurr

In 2012, at age 26, Kevin experienced unexpected renal failure due to Alport syndrome. He was previously misdiagnosed since birth with benign familial hematuria. After two years of dialysis, he received a living donor kidney transplant from a close friend in May 2014.

Kevin’s desire to help others in the rare disease and kidney communities led him to volunteer for Alport Syndrome Foundation (ASF). He subsequently held numerous positions at ASF, including Patient Outreach Coordinator, Director of Communications and Patient Engagement, Associate Director, and Managing Director.

In May 2025, Kevin was announced as the Chief Implementation and Operations Officer at PKD-Free Alliance.

Throughout his ten+ years in the kidney space, he has facilitated teen and adult programming at patient gatherings, represented kidney patients at various advocacy events and conferences, and has direct experience working with industry partners to ensure the patient voice is incorporated in clinical trial design.

He is a resident of New York and can often be found at a rock concert, a bookstore, or on a hiking trail.