Family Meetings

Alport Connect Together (ACT) will return to Cleveland Clinic (Cleveland, Ohio) on August 1-2, 2020!

Dr. James Simon will host our 2020 event and ASF is very appreciative of his efforts and those of Cleveland Clinic to facilitate these crucial patient/caregiver, physician, and researcher gatherings.

ACT Cleveland 2020 will feature four separate educational tracks:


-Teens (ages 13-18)

-Healthy Happy Kidney Program (Ages 9-12)

-“Next Level” programming for our returning patients and caregivers

Our new 2020 programming is scheduled based on your 2019 ACT feedback! Please be advised, this will be our only ACT event of 2020. Kindly make it a priority to plan around the August 2020 dates and commit with your family to attend! More details about ACT 2020 will be made available as the event nears. Make sure you are registered with ASF to be among the first to know!

I would recommend attending the Alport Connect Together meeting because it’s good to know people who are going through the same thing you are.  It was a lot of fun and easy to take in information.”
                                            – Teen Program Participant, Cleveland 2019


  • 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

We hope to see you soon!  Until then, check out some of our recent meetup photos, including professional photography of our May 2019 Alport Connect Together Event!

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