Family Meetings

Let’s Connect Together!

Our Alport family meetups are an incredible opportunity to connect with Alport experts and other Alport families.

You will leave the meeting feeling empowered with your knowledge about Alport syndrome and comforted by the new friends you have met in your extended Alport family.

Go. Just go. Do whatever you can to attend, and bring the whole family. It was very helpful not only to my son, but also incredibly helpful for me and my husband as parents, and my other son who does not have AS. It helped him understand what his brother is going through, and how to support him. It brought us closer as a family.”
Lisa Bonebrake, Alport mom, 2017 meetup attendee

These meetings provide the opportunity to:

  • Meet other patients and families affected by Alport syndrome
  • Get the latest research updates from leading experts
  • Learn more about disease management, available resources, and how to self advocate.

These two-day meetings provide vital information and support for the newly diagnosed and seasoned patients.

We provide program tracks for parents/adults and one designed specifically and separately for teens and young adults. This track is facilitated by trained fellow young patients and patient mentors. We also have fun activities and childcare for children ages 5-12.

Join us for our upcoming Family Meetings!

Save the Date!
May 4th & 5th, 2019
Cleveland Clinic in Cleveland Ohio

More information to come! 

We hope to see you soon!  Until then, check out some of our recent meetup photos and videos.

This meeting was held at the University of Utah in July 2017.

This meeting was held at the University of Minnesota in October 2017.

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