The CCHS Family Network has organized and funded nine conferences since 1990: Michigan (1993), Captiva Island, FL (1995), Nashville, TN (1998), Orlando FL (2003, 2008, 2014), San Diego, CA (2011), Orlando (2014) and St. Louis (2018). Unfortunately, due to the COVID pandemic, the 2021 conference had to be cancelled. We look forward to resuming our in-person conferences in 2024.
At these conferences, CCHS families and patients meet and share experiences, building lifelong friendships with each other. The CCHS Network plans group activities and events to foster togetherness throughout the conference. Nursing day care is provided on-site to allow parents to participate in educational presentations, while CCHS children and siblings are cared for.
Click here is an overview of the 2018 conference.