Family Meetings

Join us for the 2019 Alport Connect Together meeting! (ACT)

Cleveland, Ohio – May 4th & 5th, 2019 (Cleveland Clinic + surrounding area)


From seasoned patient to newly diagnosed, there is a place and purpose for you! Meet other families regionally and from across the country. Speak with medical experts in small groups or individually. New workshops and presentations have been developed based on patient input. Teens and young adults have a separate program from adults for the weekend.

We want to help get you there!

Travel Stipends are limited, and available on a first come first served basis:

Traveling 100-249 miles to Cleveland, stipends are $150/person

Traveling 250-749 miles to Cleveland, stipends are $300/person

Traveling 750 + miles to Cleveland, stipends are $500/person

In the interest of assisting as many as possible, total travel stipends per family not to exceed $1,000. Stipends are offered for ages 12 + who are participating in the ACT programs.


Discounted lodging for the Holiday Inn: Cleveland Clinic (one block from our event) is available at  A limited number of rooms are available at the group rate, so book today!

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 Aport syndrome. It helped him understand what his brother is going through, and how to support him. It brought us closer as a family.”
                                            – Mother of Alport syndrome patient 2017


  • Meeting other families that relate to your experiences
  • Understanding the latest research from leading experts
  • Learning more about disease management, available resources, and how to self advocate.
  • Socializing and building bonds with families you will reach to for support over time

The teen/young adult program is facilitated by trained fellow young patients and patient mentors. We also have fun activities and childcare for children ages 5-12.

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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