You must be a member to register for the conference. Make sure to join before registering if you have not already done so.
Average attendance is about 60-75 families for a total of 250-300 people. The majority come from the USA and Canada and there are usually some families from overseas too. You’ll meet about 50 people with Sotos of all ages from infants and toddlers to teens and adults.
Note: Orlando is expected to be popular for families in 2026, and
seating—especially for the Friday night event—is limited. We encourage you to register
early. Look for updates on when conference registration opens.
Most families bring their child with Sotos, especially if it is their first conference. This is the easiest way to meet with one of the medical experts and discuss any questions. Some people don’t bring their child with Sotos if traveling is difficult or expensive or if they have attended numerous conferences and simply wish to stay in touch with fellow Sotos families. Another consideration is that older children with Sotos often appreciate the opportunity to meet other individuals with Sotos who are “just like me”. With or without your child- either way is fine – you’ll enjoy the conference.
Yes, just bring photos and your child’s medical records.
No, it’s included in the conference fee.
We provide exceptional childcare throughout the conference for all the children with Sotos and their typical siblings. We aim to make sure that all the children have a great time. Many families make the Sotos Conference part of their annual holiday and take the opportunity to visit new parts of the country. Sometimes older siblings benefit from meeting other families dealing with Sotos and learning that they are not alone.
He/She may either register as an adult and attend the workshops, or register as a child/young adult and take part in the fun activities on Saturday and Sunday with the older teens.
Yes, as long as they are under 1 year old and completely quiet. You must be prepared to leave the lecture if they are disturbing anyone.
No, but they will not be included in the Saturday group lunch or Sunday group breakfast. If they will be attending the Friday evening family dinner/entertainment, they will need to pay a separate fee for the Friday ONLY meal. Separate pricing for Sunday breakfast is not available.
The registration fee covers dinner on Friday, scheduled breaks on Saturday, and Saturday lunch for children. All registered hotel guests are also extended a
complimentary daily buffet breakfast and access to the evening Kickback© event at 5:30 pm, which features hot food and beverages.
As a family event, the dinner on Friday evening is relaxed and casual. Most people wear clothing somewhere between everyday-casual and business-casual. It’s definitely not fancy or formal.
Conference check-in begins at Noon on Friday. Your flight times depend on whether you want to have a doctor appointment or not. The conference takes place from noon on Friday until 5 p.m. on Sunday.
Yes. We’ll e-mail you approximately 2 weeks after we receive your registration and payment.
We try to move the conferences around the U.S. and Canada to make it easier for different families to travel to the conference each year. The location of the following year’s conference is usually available on the web site by July each year. At any time of the year you can contact us at conference@sotossyndrome.org or call 1-888-246-7772 to ask about future conferences. If you are interested in organizing a conference in your home town, check out THIS overview on How to Plan a Conference and feel free to contact us for more information.
Cancellation requests received by 1 week before the start of the conference will receive a full refund. Other requests will be considered on a case-by-case basis. You can e-mail your cancellation to conference@sotossyndrome.org or phone 1-888-246-7772.
You can e-mail conference@sotossyndrome.org or phone 1-888-246-7772.