Alport Syndrome Foundation (ASF)
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The Alport Syndrome Foundation (ASF) is an all-volunteer-led, non-profit organization founded in 2007 by a group of families affected by the disease and guided by a Medical Advisory Committee of renowned Nephrologists. The Foundation was built on the past efforts of the late Dr. Curtis Atkin (who himself had Alport Syndrome) at the University of Utah and the Hereditary Nephritis Foundation. ASF is the leading independent non-profit organization in the United States serving and giving a voice to the Alport Syndrome community.
The ASF VISION is to make Alport Syndrome a treatable disease and ultimately find a cure.
The ASF MISSION is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and funding research.
ASF is focused on realizing this Vision, and has directed 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. 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.- Website
- http://www.alportsyndrome.org/
- Sector:
- Not For Profit
- Type
- Medical Research
- Health Consumer
- Medical Conditions
- Alport syndrome
- Related Topics
- Rare Disease
