Important Links

CCHS Literature

Helpful Literature on CCHS: Some Sources to Get You Started

Family Conferences

Family Conferences
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.

Click here for the 2022 CCHS Virtual Program

Professional Conferences

In 2023, the CCHS Network, along with the international community, will host a CCHS Science Conference in Orlando, FL, USA.