Family Meetings

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

Registration is now closed. 

We have 120 people registered, including 19 teens!  We look forward to a great weekend of connection and learning. 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 post photos on social media so check out ASF’s instagram, twitter, and FB page. We’ll also update our site with what we’ve learned in Cleveland. Thank you to everyone who is registered and plans to attend.  We’ll keep everyone posted when the 2020 Alport Connect Together meeting date and location are confirmed. 

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

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. We also have fun activities and childcare for children ages 5-12.

JOIN US!
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.

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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