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Share Your Diagnosis Story to Help Research!

Alport syndrome Diagnosis Stories – Why Capturing YOUR Story Is Important

MARCH 2022 UPDATE: In an effort to capture the experiences of all new members of the Alport syndrome community, we’ve decided to keep the survey project ongoing and will share updated statistics in April 2022. View survey data as of February 2021 at this link.

Alport syndrome is commonly misdiagnosed. In an effort to more clearly understand why, under the guidance of our Medical Advisory Committee, we have 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 brief survey, open to the global Alport patient community, is anonymous, or you may choose to provide email contact information in case clarification is needed.

How can I share my Diagnosis Story?

The following are links to two brief surveys – one for patients and one for parents. Both might apply to you. YOUR STORY IS IMPORTANT.

1) A patient survey for those age 18 or older with a confirmed Alport syndrome diagnosis:

Take the Patient Diagnosis Stories Survey

2) A survey for a parent of a pediatric patient. We kindly ask that only one parent complete the survey. It’s important the child’s information is only provided once.

Take the Parent Survey on behalf of your first-diagnosed child


Please note: Patients with children under age 18 are encouraged to take BOTH the Patient and the Parent Diagnosis Story Survey. Thank you for your participation.