Alport Syndrome Foundation
Non-profit OrganizationsUnited States11-50 Employees
Our mission is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and direct investment in research. ABOUT ALPORT SYNDROME Alport Syndrome is a rare genetic kidney disease that causes a decline in kidney function that often leads to kidney failure and need for transplant, hearing loss, eye conditions, and other complications. There is no cure for Alport syndrome, and no treatment proven to prevent the development of kidney failure. Early diagnosis is essential as there are medications to delay disease progression. The majority of the Foundation's resources are directed to research to find treatments and/or a cure, including the collection of human data through sponsoring its own patient registry in the United States and other natural history data including patient bio samples. The Alport Syndrome Foundation (ASF) is the leading independent nonprofit organization in the United States serving and giving a voice to the Alport syndrome community of patients and families. For more information, visit www.alportsyndrome.org.