The conference is a fun and powerful experience combining education, collaboration, and community-building. Attendees can discover the latest advancements in SETBP1 research, connect with fellow SETBP1 families, and hear from leading researchers and experts in the field.
Dates: November 6-8, 2026
Location: Austin, TX
Hotel: DoubleTree Suites by Hilton Austin Downtown Capitol
Hotel guest room rate: $189
Volunteer Information
Interested in Volunteering at the Conference? We have volunteer opportunities to help with registration, in the child care rooms, help with the Saturday dance, or to help out in general. Click below to express an interest.
Interested in helping sponsor our 2026 SETBP1 Family & Research Conference. Check out our Sponsorship levels and details here
Queen Bee Level:
Bumble Bee Level:
Friday, November 6th
- 7:00am-8:30am Researcher Check-In
- 8:30am-9:00am Pre-Meeting Informal Gathering
- 9:00am-4:00pm Researcher Meeting
- 4:15pm Researcher Photo
- 8:00am-5:00pm Family Research Participation
- 12:00pm-7:00pm Family & Volunteer Check-In
- 4:00pm-5:00pm Family Social
- 5:00pm-6:30pm Family And Researcher Meet and Greet & Poster Showcase
Saturday, November 7th
- 7:00am-10:00am Family, Volunteer, Childcare Worker, and Panelist Check-In
- 7:30am-8:45am Breakfast
- 8:00am-5:10pm Hospitality Room/Childcare (optional)
- 7:00am-5:00pm Family Research Participation
- 9:00am-9:20am Welcome & SETBP1 Parent Story
- 9:20am-10:00am Simons Searchlight SETBP1 Registry Update
- 10:00am-10:40am SETBP1-HD/RD Standards of Care
- 10:40am-11:00am Break & Poster Showcase
- 11:00am-12:00pm Ask a Therapist/Medical Specialist Panel
- 12:00pm-1:00pm Lunch for Conference & Childcare Attendees
- 1:00pm-2:00pm SETBP1 Parent/Caregiver Discussions
- 2:00pm-2:30pm Animal & Cellular Disease Model Research Project Updates
- 2:30pm-3:00pm SETBP1 Participatory-based Research Project Updates
- 3:00pm-3:20pm Break & Poster Showcase
- 3:20pm-4:00pm Targeted Treatment Updates
- 4:00pm-4:55pm SETBP1 Society Overview
- 4:55pm-5:00pm Wrap-Up
- 5:20pm-5:35pm SETBP1 Conference Attendees Photo
- 5:35pm-6:30pm SETBP1 Gathering at Pool (Unofficial) /Free Time
- 6:30-8:00pm Dinner
- 7:30pm-9:30pm Awesome Dance Party
Sunday, November 8th
- 7:00am-12pm Family Research Participation
- 7:15am-8:30am Breakfast
- 8:00am-11:20am Hospitality Room/Childcare (optional)
- 8:45am-9:00am SETBP1 Parent Story
- 9:00am-10:00am Education, Advocacy, IEPs & More
- 10:00am-10:40am SETBP1 Parent/Caregiver Discussions
- 10:40am-11:00am Closing
- 12:00pm-3:00pm SETBP1 Family Outing
Conference guests have access to special conference rates at DoubleTree Suites by Hilton Austin Downtown Capitol, which is the same location as the conference. All rooms at the hotel are suites!
Hotel Rate: $189 per night plus applicable taxes – available until the block fills up or until October 10th.
Hotel accommodations should be booked separately from registration and are not included in registration costs.
DoubleTree Suites by Hilton Austin Downtown Capitol
303 W. 15th Street
Austin, Texas 78701-1692
(512) 478-7000
Parking: Parking at the hotel is a reduced rate of $25 per night. If you would like SETBP1 Society to cover the hotel parking costs for the conference dates, please indicate this during your conference registration. Rideshare options (Uber/Lyft) are also available in Austin between the conference hotel & airport (and throughout the city) if you will be traveling by air and do not intend to rent a vehicle.
Note: The rideshare (Uber/Lyft) pickup at the airport is located in the parking garage in a designated area outside the Austin Bergstrom airport.
Conference registration is now open! Below is a list of conference costs for your planning.
You may book your hotel rooms in the Accommodations section. Hotel costs are not included in the registration costs. The special rate for the hotel is valid through October 16, 2026. After October 16, 2026 or the room block fills, reservations will be based upon hotel availability.
Conference Early Bird Pricing – May 15th – August 15th
Child (5-15)
Child (<5)
SETBP1 Individual
$65
Free
Free
Conference registration pricing includes access to the Meet and Greet, 2 breakfasts, 1 lunch, dinner and dance party, and a conference t-shirt! Adult pricing also includes access to all research and educational sessions.
Childcare registration is a separate registration from the conference registration and will be charged separately from conference registration. Register for childcare before October 20th.
An optional SETBP1 family outing will also be available Sunday morning and registration for that will be available as the conference date approaches.
On-site research opportunities will be available for attendees during the conference.
EEG Biomarker Study & Additional Assessments
COMBINEDBrain Biospecimen Collection
Additional assessments – to be determined
More information will be added as the conference approaches.
Childcare is available for children ages 1 year old to young adults. The childcare is for children with SETBP1-HD and related disorders and their siblings.
Childcare will be provided with a 1:2 – 1:5 ratio, depending on each individual child’s needs. There will be 2 childcare rooms on-site. A caregiver can remain with the child in one of the rooms at no charge. A child can remain in one of the rooms without a caregiver for the childcare cost.
Childcare Cost: $35 per child for Saturday and $15 per child for Sunday
Elementary and middle school special education teachers and teacher assistants will provide the childcare services. Volunteers will also be in the childcare rooms to help entertain the kids and help the childcare providers.
Childcare registration is a separate registration from conference registration. You will be charged separately for childcare registration. Please register each child using the Register button below.
SETBP1 Society will offer a limited amount of scholarships based on family need to help offset the costs of the conference. Steps to apply for the scholarship:
- Recommended as Early as Possible: Register for the conference. (Early bird pricing ends August 15th and regular registration closes October 16th)
- Complete the Travel Scholarship form with your child’s genetic report provided.
- Complete the scholarship form before the September 20th deadline. Acceptance notifications will be provided within 30 days of completing the scholarship form.
- Attend the 2026 SETBP1 Family & Research Conference.
- Complete the post-event survey and include a testimonial.
Approved scholarships will cover up to 2 nights (domestic travel) or 3 nights (international travel) for 1 hotel room at the DoubleTree Suites by Hilton Austin Downtown Capitol.
Additional Travel Support for Families
- You may also be eligible to receive travel and attendance support from The National Organization for Rare Disorder’s Education Support Program. Applicants must be a US citizen or permanent resident of the US. Please see their flier for information on how to apply.
- Another source of travel and conference support is through your child’s IEP (Individualized Education Plan). Click here to learn more.
- Another great resource for additional conference assistance opportunities is available here
Travel Support for Researchers
Uplifting Athletes has a program to assist with travel expenses for rare disease researchers and doctoral students with an interest in the rare disease field. Applicants must reside in the United States or Canada and meet specific requirements. Learn more here.