Announcements

Apply Now for the Paul Silver Tribute Award!
Applications are now being accepted for the annual Paul Silver Tribute Award. The award is open to young people with Alport Syndrome, ages 16-22.

Alport Syndrome Research Studies
Regulus Therapeutics is recruiting for a Phase II study to evaluate a new investigational agent, RG-012, in people with Alport syndrome. In addition, Regulus is still conducting an observational study to learn more about how the disease progresses. For more details, including international participating study locations, go to the study website.

Research Funding Announcement
Announcing funding of two $100,000 Alport Syndrome research projects.

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

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.

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

Stay Updated!
Have you seen the latest ASF newsletter?
Be sure to register to receive the newsletter each month.

Events

Annual Campaign for Healthy Kidneys
Join the Annual Campaign to raise funds for Alport Syndrome research. Be a fundraiser. Host an event. Make a donation. Spread the word!

Generosity NYC
Participate in an Alport Syndrome 5K in NYC! Join Generosity NYC and raise $200 or more for ASF.

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