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Shop the ASF Store
Help raise awareness and show your support for Alport Syndrome patients and families with sweatshirts, t-shirts, mugs, key rings and other merchandise at the ASF Store.

Alport Syndrome Observational Study
A observational study for Alport Syndrome patients is being conducted by Regulus Therapeutics. For more details, including international participating study locations, go to the study website.

Join the Patient Registry
Be advised of new clinical studies and trials. Join today!

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Los Angeles, CA, Alport Family Meeting
Don't miss this exciting weekend May 21-22! Online registration is closed but you can still register in person Saturday morning. Hotel reservations can still be made and other details about the Family Meeting are available here.

ASF Virtual Walk
Join others in the Alport community in a nationwide Virtual Walk on Saturday, June 18. Register now!

St. Louis, MO, Alport Family Meeting
Registration, hotel accommodations and other details for the St. Louis Family Meeting on July 30-31 are now available.

Hackensack, NJ, Alport Family Meeting Registration for the Hackensack Family Meeting on September 10-11 is now open! Additional information on the event can be found here.

Join Team ASF
Are you participating in a Tough Mudder, triathlon, marathon or other race? Join Team ASF and dedicate your efforts to Alport Syndrome.

For more details about these and other events, go to Upcoming Events.

To read about recent events go to Past Events.

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Stories and Videos

Family Stories
  • Robbie’s Story

    I was born with Alport Syndrome. It runs on my mother’s side of the family. They knew when I was born that I most likely had the disease. I have two older brothers and they also have Alport Syndrome and my mother is a carrier. As far as cousins and other family members, none have it that we are aware...

  • Missy’s Story

    My story starts when I was young, too young to really remember.  My mom says I was still wearing diapers, so I was only a year or two. She noticed the color of my urine was dark.  I went through all kinds of tests.

  • Lisa‘s Story

    When I was a senior in high school I started to become sick. I had just lost my father a few years prior and our family had barely started the process of trying to recover from that. I was just a rebellious kid who was terrified knowing that something wasn’t right with my body.

  • Todd‘s Story

    The first time I heard about Alport Syndrome was in the second grade when our family doctor told my parents I had the disease. Maybe being diagnosed with it early before I even understood anything about it was a blessing, since I really did not worry much about it.

Alport Syndrome Videos
Alport Syndrome Foundation
Alport Syndrome
Story of Alport Syndrome
Messages of Hope - Meet Kevin
Messages of Hope - Meet Jessi
Patient to Patient - John