Alport Syndrome Foundation

The Alport Syndrome Foundation is a non-profit organization based in Scottsdale, AZ, dedicated to supporting and advocating for the Alport community of patients and families. They provide resources and educational materials on Alport syndrome, a genetic kidney disease, and offer support for individuals of all ages, from teens to adults and caregivers.

The foundation actively engages in research through their patient registry and the NEPTUNE Natural History Study, aiming to advance the understanding and treatment of Alport syndrome. They also facilitate direct connect meetings and virtual events, providing opportunities for patients, medical professionals, and researchers to connect and share knowledge. Through their efforts, the Alport Syndrome Foundation strives to improve the lives of those affected by this rare genetic disorder.

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