Organization Spotlight: Alport Syndrome Foundation (ASF)
About the Alport Syndrome Foundation
Alport Syndrome Foundation is the leading patient-led, independent, nonprofit organization in the United States serving and giving a voice to the Alport syndrome community. ASF’s mission is to improve the lives of patients through education, empowerment, advocacy, and investment in research. ASF’s vision is to conquer Alport syndrome. ASF directs the majority of its resources to research and research-related activities. ASF also raises awareness and provides educational resources for patients, medical professionals, and researchers through the Alport Syndrome Foundation website, regular email communication with patients, social media presence, and participation at medical and rare disease conferences. Patients, family members, and caregivers are encouraged to register for Free Membership with the Alport Syndrome Foundation to learn about treatment, ongoing research, clinical trials, events, and more.
What is Alport syndrome?
Alport syndrome is a genetic kidney disease passed down in families from parents to children, though it can occur spontaneously. It often leads to end-stage renal disease and can cause hearing loss, eye abnormalities, and other less-studied complications. The disease is caused by genetic mutations that affect the Type IV collagen a345 family of proteins in the connective tissue or network of basement membranes found in the kidneys, ears, and eyes. It affects people of all ages, sexes, and backgrounds. Females are often characterized as “carriers,” but many experience disease symptoms and can progress to end-stage renal failure. Prevalence is estimated to be less than 200,000 people in the U.S. making Alport syndrome a rare disease. No reliable prevalence studies are available. Alport syndrome is typically diagnosed through either kidney biopsy, genetic testing, or both. A family history of kidney disease often plays a factor in a suspected Alport diagnosis. Currently, there is no FDA-approved therapy for Alport syndrome.
Contact Information
Alport Syndrome Foundation
P.O. Box 4130
Scottsdale, AZ 85261-4130
For more information on the Alport Syndrome Foundation, please visit www.alportsyndrome.org.
Important Resources for Patients with Alport Syndrome
Important Resources for Medical Professionals
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