Coffin-Siris Syndrome Foundation Annual Conference

https://www.zeffy.com/en-US/ticketing/coffin-siris-syndrome-foundation-annual-conference--2026

The Coffin-Siris Syndrome Foundation is a nonprofit organization supporting individuals and families affected by Coffin-Siris Syndrome (CSS), a rare genetic condition. We are a volunteer run organization founded by parents of kids with CSS.

This July, our foundation will host our annual family conference in Orlando, Florida, bringing together families from across the world for education, support, advocacy, and meaningful community connection. The conference has been held ever year since 2017, and this is the first time we will be in Florida.

This year will be our largest conference ever with over 100 people with CSS attending and 400 family members. Our community is growing, which is exciting and challenging at the same time.

Working with Zeffy has supported our growth in many ways. With Zeffy we can create unique registration discount codes for family and caregiver scholarships. We love the new shop on Zeffy to sell t-shirts. We use the communication tools to send monthly emails with events and research updates. We also use it for our annual fundraising Walk Run and Roll in addition to our annual conference. We will also have a virtual option, with tickets sold on Zeffy, for those families who cannot attend in person due to medical or financial challenges. Thanks Zeffy!