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Share Your Story

Some Ideas to Include

  • What is your relationship to Alport syndrome?
  • Do you have other family members affected?
  • What has been the biggest challenge so far and how have you overcome it?
  • Has living with Alport syndrome taught you anything specific or shaped you in some way?
  • What advice would you give to others?
  • What is your hope for the future?
  • Have you been involved with Alport Syndrome Foundation events or programs?

By sharing your story, you grant ASF permission to use your story on the website and in social media to raise awareness.

The Submission Process

  • Use a Word document that is no more than 2 pages long, single-spaced.
  • Provide your full name, email and phone number for contact. If you are under the age of 18, we will need an email from a parent or guardian to approve permission to use your story and photo.
  • Email to [email protected]
  • Include at least one but no more than 3 photos with it (we will select one).
  • You must be a member of Alport Syndrome Foundation to submit a story. Membership is free, join here.

Thank you for sharing your story and helping raise awareness of Alport syndrome. 


Sharing your story can help inspire and inform others facing Alport syndrome, and raise awareness about our rare genetic disease.  This is a valuable way to join our efforts.