ALPORT SYNDROME FOUNDATION INC
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Mission Statement
The mission of the Alport Syndrome Foundation is to improve the lives of those affected by this genetic kidney disease through education, empowerment, advocacy, and by funding research to make Alport Syndrome a treatable, potentially curable, disease.
About This Cause
Alport Syndrome Foundation (ASF) is the leading independent non-profit organization in the United States serving and giving a voice to the patient community. Our vision is to make Alport syndrome a treatable disease and ultimately curable. ASF is focused on realizing this vision, directing the majority of the Foundation’s resources to medical research. ASF raises awareness in the patient and medical community and is fostering collaboration among Alport Syndrome stakeholders all over the world – including alliances with international patient support groups, patient registries, and medical researchers. In 2021, ASF established a Scientific Advisory Research Network of Alport experts globally, all collaborating under the umbrella of ASF to exponentially move research forward. ASF empowers the Alport Syndrome community by centralizing medical information, hosting patient meetings and conferences, and providing education, advocacy, communication and a network of support. Since 2011, ASF has directly invested more than $2 million in research. This seed funding has resulted in ASF-funded researchers securing more than $20 million of funding from other major sources (such as the National Institutes of Health) to expand and sustain their efforts. Alport Syndrome is a hereditary kidney disease that causes decline in kidney function, hearing loss and vision abnormalities. Based on genetic type, the disease leads to kidney failure for most males by the time they reach their 20s. Females are affected too, with rate of disease progression based on genetic type. Alport Syndrome is estimated to affect at most 1 in 5,000 people, but the disease is still often misdiagnosed or undiagnosed. There is no cure or approved therapy. As a genetic disease, Alport syndrome often affects multiple family members across generations. It is a diagnosis for the entire family, not just the individual. When a family receives an Alport Syndrome diagnosis, it is vital to connect with others for support, educational resources and access to knowledgeable medical experts. Until the Alport Syndrome Foundation (ASF) was established in 2007, there was no place for patients and families to turn for support.