Updated March 18, 2021
Alport syndrome is commonly misdiagnosed. In an effort to more clearly understand why, under the guidance of our Medical Advisory Committee, we developed multiple choice and free response questions encouraging patients to share their diagnosis stories. Collectively, this information can help medical professionals understand the patterns and tipping points for an accurate Alport syndrome diagnosis.
The attached infographics represent a fraction of many insights captured from the anonymous “Diagnosis Stories” patient survey. Information reflects the experiences of 240 patients with a confirmed Alport syndrome diagnosis who took the survey between January 21, 2021 and February 28, 2021. View the full report by clicking the blue link below.
ASF has decided to keep the surveys open so updated statistics can still be shared in the months and years to come. If you have not participated in the “Diagnosis Stories” project, you can share your experience here.
Thank you to the generous sponsors of the “Diagnosis Stories” project: