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.

Travel stipends available.  For families traveling more than 200 miles to a meetup, a $100 per person travel stipend will be offered to help cover costs of travel with a maximum of $400 per family.

Join us for one of these upcoming Family Meetings!

Register today
for our Miami meetup!

April 21 – 22, 2018
University of Miami
4600 Rickenbacker Causeway
Miami, Florida

Click here to be notified
when registration opens

September 29 – 30, 2018
University of Texas Southwestern
5323 Harry Hines Blvd.
Dallas, TX 75390

Click here to be notified
when registration opens

Hotel: Hampton Inn by Hilton Miami – Coconut Grove/Coral Gables
2800 SW 28th Terrace
Coconut Grove, FL 33133

  • Reserve room online
  • Call 1-800-426-7866 24 hours a day. Provide Group Code: CHXASF and Property Code: MIACG 

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

SALT LAKE CITY, UTAH
This meeting was held at the University of Utah in July 2017.

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

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