2026 ASXL Family Conference programming

The full program for the ASXL Family Conference is in development. Here’s a sneak peek of what we’re planning:

• Education sessions:

  • Research updates from scientists and doctors

  • Epilepsy

  • Communication

  • Behavior

  • Gastrointestinal symptoms

• Workshops:

  • Caring for the Caregiver

  • “What’s missing from this list?” - Crowdsourcing symptoms and features of the ASXL-related disorders from families and caregivers

  • Family feedback on a new ASXL-specific clinical assessment

• Specialty programming:

• Safe transfers for bigger kids and adults

• Ask-a-Genetic-Counselor: help reading your genetic report

• Sibling programming

• Remembrance of lives lost

• Research participation*:

  • Give a blood or tissue sample

  • Participate in the ASXL Behavioral Phenotyping Study (ALPS)

  • Participate in the CHAMPION Study

*Pre-enrollment is required; please indicate your interest in participating in research as soon as possible

Need a deeper look at how the program has worked in the past? Check out last year’s 2024 ASXL Family Conference program (PDF) for reference.