2026 ASXL Research Symposium and Family Conference

The ASXL Research Symposium and Family Conference has multiple parts:

• ASXL Research Symposium (Thursday, June 25 and Friday, June 26): Open to the research and scientific community

• ASXL Community Celebration Dinner (Friday, June 26): Open to all

• ASXL Family Conference (Saturday, June 27 and Sunday, June 28): Open to all; programming is designed for ASXL families and caregivers

• Research study participation (Thursday, June 25-Sunday, June 28): Research appointments will be available throughout the conference dates; families interested in participating in research are encouraged to plan to arrive before the start of the family programming and schedule appointments on Thursday, Friday and/or through late afternoon on Sunday.

For families: The ARRE Foundation is offering family scholarships for the 2026 ASXL Family Conference. The amount varies based on where the family is traveling from, and priority is given to families who seek to participate in research opportunities at the conference. Scholarships are intended to help support the cost of attendance but typically do not cover all costs. The scholarship application process will be open from January 15-February 15, 2026. Scholarship decisions will be communicated by March 15, 2026. You will need your/your child’s genetic report as part of the application process. Please contact us if you need help locating this document.

For researchers: The ARRE Foundation will offer travel grants to young investigators who would like to present their work at the 2026 ASXL Research Symposium. Applications will be accepted from January 15-February 15. Learn more about the application process

All members of your family are welcome to attend the ASXL Family Conference, including your loved one with an ASXL-related disorder. Most families bring their children, but some parents/caregivers attend alone. You may also find it helpful to bring an additional caregiver with you. Please do what works best for your family and your situation! Please note: Some in-person research opportunities at the conference do require the individual with the ASXL-related disorder to be present.

Thank you for your interest in participating in research! Please complete this online form to indicate your initial interest in participating in research opportunities at the 2026 conference. Planning and scheduling research appointments during the conference across multiple studies is a very complex process, and we appreciate knowing about your interest as soon as possible so we can help coordinate next steps with the research teams.

The ARRE Foundation has a block of discounted hotel rooms at the Sheraton Ann Arbor for a rate of $169/night plus applicable taxes. Breakfast is included in the cost of the room up to 2 people per King Bed guest room and 4 people per Queen-Queen Bed guest room. The room block will open for reservations in January 2026. Reservations must be made by June 1, 2026 to receive the discounted rate. Additional nearby accommodation options may also become available.

Yes! Every part of the conference is designed with ASXL families and people with disabilities in mind. We know how challenging it can be to travel.  Accessible features of the ASXL Research Symposium and Family Conference include:

• Family Lounge: The Family Lounge is open Friday-Sunday with foam floor mats, sensory toys, and activities. A full size refrigerator for medications and feeding supplies is available to attendees 24/7 in the Family Lounge.

• Accessible restrooms: The venue has standard wheelchair accessible stalls. An additional restroom will be designated as a gender-neutral restroom with an adult-sized changing table.

• Accepting environment: Creating community and support with people who “get it” is a core value of the ASXL Family Conference! Your family is welcome and accepted as you are. Vocalizations welcome!

• Accessible guest rooms: A limited number of guest rooms at the Sheraton Ann Arbor are wheelchair accessible (including roll-in showers). If you need a wheelchair accessible room, please call the hotel after making your reservation to confirm you are in a wheelchair accessible room.

Registration fees are based on the attendee type, which parts of the meeting you attend, and when you register. These fees are provided to help attendees create an initial budget; they are not final and are subject to change before registration opens in 2026.

• ASXL Research Symposium: Registration fees are $125 for trainees, $225 for academic/nonprofit, and $500 for industry. Rates increase after May 15. Registration includes lunch on Thursday and Friday.

• ASXL Family Conference: Family attendees are provided with a “pay what you can” rate of $0-50 per person to register for conference programming; you must register by May 15 for this rate. Registration includes lunch on Saturday.

• ASXL Community Celebration Dinner (Friday): Kids $10/Adults $30

• Pizza & Movie Night (Saturday): Kids $5/Adults $10

Family attendees can use the budget planner template to help plan for costs associated with attending the conference.