Alport Syndrome Foundation

Healthcare Facility/Healthcare Services - , , US

Alport Syndrome Foundation Employees
Afton DeLucca

Patient Engagement Coordinator

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Kevin Schnurr

Director of Communications and Patient Engagement

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Alport Syndrome Foundation Details

The ASF MISSION is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and research.The ASF VISION is to conquer Alport Syndrome. ABOUT ALPORT SYNDROMEAlport Syndrome is a rare hereditary kidney disease that causes a decline in kidney function, hearing loss and vision problems. The disease leads to kidney failure for 50% of most boys by age 25. 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 affects multiple family members across generations. There is no cure for Alport Syndrome and no treatment proven to prevent the development of kidney failure; however, early diagnosis is essential as there are medications to delay the progression of the disease. The majority of the Foundation's resources are directed to medical research to find treatments and a cure to prevent kidney failure and hearing loss in all patients.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. For more information, please visit www.alportsyndrome.org.

Alport Syndrome Foundation logo, Alport Syndrome Foundation contact details
Employees: 5 - 9
HQ:
Location: , , US
Revenue: < 500k
Patient Education and Advocacy Clinical Practice Guidelines Professional Education Support Community Research Funding Kidney Disease Alport Syndrome Awareness Kidney Health 5K for Healthy Kidneys Fundraising
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