Announcements

Support ASF While You Shop
Support ASF while you shop online at Amazon, Best Buy, Nike, and thousands of other stores, including the ASF Store. Learn how!

Announcing Peer Support Network
The ASF Peer Support Network will provide a more personal and private means of support for members. Applications for Peer Mentors are now being accepted.

Alport Syndrome Research Studies
Reata Pharmaceuticals announced a new interventional Phase 2/3 study will begin in 2017.

In addition, Regulus Therapeutics is still recruiting for the ATHENA observational study. Enrollment for the HERA interventional study will begin in 2017. 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!

Stay Updated!
Have you seen the latest ASF newsletter?
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Events

Annual Campaign for
Healthy Kidneys

Help fund Alport Syndrome research by supporting the Annual Campaign. Make a donation. Spread the word. Be a fundraiser.

Alport Awareness Month
Make plans now to celebrate the 4th annual Alport Awareness Month!

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