We are excited to announce a powerful patient engagement initiative for 2016—and beyond!
These meetings provided 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 provided vital information and connections for both newly diagnosed and seasoned patients and provided program tracks for parents/adults and one designed specifically and separately for teens and young adults. This track was facilitated by trained fellow young patients and patient mentors! We also had fun activities and childcare for children ages 5-12.
Three of these exciting meetings were held in 2016!