Family Meetings

The 2019 Alport Connect Together meeting hosted by the Cleveland Clinic – Cleveland, Ohio, May 4th & 5th.

We enjoyed a great weekend of connection and learning with 114 patients and/or family members from 18 states, including 19 participants in the Teen Program, and 10 participants in the Healthy Happy Kidney Program for 8-12 year olds.  Thank you to our host, Dr. James Simon, and Cleveland Clinic. 

Many thanks to our event sponsors:

Diamond Sponsor:  – Reata Pharmaceuticals

Bronze Sponsors: – Retrophin  and Sanofi Genzyme

We’ll keep everyone posted when the 2020 Alport Connect Together meeting date and location are confirmed. 

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

BENEFITS OF ACT FAMILY WEEKENDS:

  • 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. 

More information to come! 

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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