CSS Conferences have been hosted annually each summer since 2016 in a different location in the US. Each conference has been organized by local hosts and sponsored by the Foundation. 

Conferences in Europe and Australia have happened at less consistent intervals with varying levels of Foundation support. 


2021 Conference

April 30 - May 2, 2021

We are excited to offer a conference format for 2021 that connects families, enables access to resources, and keeps families safe by way of virtual connection. This is our first virtual conference, and we appreciate the opportunity to connect with families from many locations across the United States and around the world. The theme of the conference is "true grit." 2020 was a trying year for all of us and provided many opportunities to show courage and strength of character. Every member of the CSS community, from patients to parents to other caregivers, lives with true grit and deserves to be honored. Thank you for taking this virtual journey with us as we celebrate you.

What: You are invited to the 2021 Coffin-Siris Syndrome Foundation virtual conference! The conference will provide an opportunity for you to connect with the global CSS community and learn from experts in fields relevant to the care of individuals with CSS. We plan to provide content related to seizure disorders, autism spectrum disorder, feeding challenges, speech delays and therapies, IEP and financial planning, young adults/adults living with CSS, breakout sessions for moms/dads/siblings, and others. The keynote speaker is Dr. Samantha Vergano, who serves as a medical advisor to the Foundation’s board. As additional speaker information becomes available, it will be posted here and on the Facebook event.

Who: The content of the conference is specially designed for individuals with CSS, the family members and people who care for them, and medical professionals in the CSS community. All are welcome.


When: The conference will take place Friday, April 30 - Sunday, May 2, 2021. Multiple sessions will be offered each day, including a variety of morning, afternoon, and evening sessions. Exact times will be announced as we continue to confirm speaker availability in the coming weeks.  Each session will last approximately 55 minutes, including 15-20 minutes for real-time questions and answers.


Cost and registration: The registration fee is $50 and includes attendance for all members of your immediate household. This ticket includes real-time access to all conference content and participation in live Q&A sessions and panels. If you register prior to April 1, 2021, we will also mail a gift bag to your home. You can register up until the last day of the conference, May 2nd, using the "Register Now" link above. (Please note: If you live outside of the continental United States, we will add $10 for a total of $60, to include the additional shipping cost of the gift bag.) For any questions about the conference, please email or visit our Facebook event.

Technical requirements: To make the most of your attendance, we recommend using a high speed internet connection to participate. In advance of the conference, you will receive specific instructions to log in and participate.


Annual Summer Conference

If you would like to learn more about what it means to host the CSS Conference, please contact us.


©2020 by Coffin-Siris Syndrome Foundation