Alport Syndrome Foundation Inc

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About Alport Syndrome

Alport Syndrome is a rare hereditary disease that causes a decline in kidney function, hearing loss and vision problems. The disease leads to kidney failure for most boys by the time they reach their 20s. Girls are affected too, with some impacted similarly to boys but most seeing later disease progression. An Alport Syndrome diagnosis devastates families because it often afftects multiple family members in every generation. 

Like many rare diseases, Alport Syndrome is often misdiagnosed or undiagosed. There is currently no treatment proven to prevent the development of kidney failure in people with Alport Syndrome; however, early diagnosis is essential as there are medications to delay the progression of the disease. 

About The Alport Syndrome Foundation

The Alport Syndrome Foundation (ASF) was launched in 2007 as a grassroots effort by families affected by the disease to provide a support community linking patients, medical providers and the scientific research community. The Foundation is guided by an all-volunteer Board and a Medical Advisory Committee of renowned Nephrologists.

ASF has grown to be the leading independent non-profit organization in the United States serving and giving a voice to the Alport Syndrome community. 

For more information 

To learn more about the Alport Syndrome Foundation, go to www.alportsyndrome.org.