Alport Syndrome Foundation Inc

Programs: Competitive research funding program. The asf research program is funded in large part by the annual campaign for healthy kidneys as well as other fundraising events. Asf has developed strategic alliances and international partnerships to increase the resources applied to finding novel treatments and a cure. Since 2010, asf and its partners have provided more than 2 million dollars on research projects for alport syndrome that have focused on correcting the genetic defect in cells derived from patients, basic science on the structures of the kidney that affect the basement membrane and disease progression, protein replacement therapy, microrna therapy, antibody therapy, and drug repurposing.

alport treatments and outcomes registry astor. Asf provides funding and support for patient registry astor based at the university of minnesota. In addition, asf helps recruit patients and family members to join the registry through education on the significance of a registry for clinical studies for a rare disease such as alport syndrome

patient meetings. Asf sponsors patient meetings and conferences to bring the patients and experts together to empower those affected by alport syndrome with information and support. Asf has connected more than 7,000 patients, families, researchers and physicians in at least 74 countries. It is estimated there are 30,000 - 60,000 alport syndrome patients in the usa, but the disease is often misdiagnosed or undiagnosed until kidney failure is imminent. Patients then need information and support swiftly. Teen/ young adult support program asf provides specialized support to this age group, particularly hard hit by this disease, including special programs at family conferences, a dedicated facebook page called alport avengers, and sponsoring the paul silver tribute awards.