Friday, July 19, 2019 to Sunday, July 21, 2019

2019 ASXL Conference

8:45 AM to 6:00 PM

Hilton Garden Inn - Ann Arbor, 1401 Briarwood Circle, Ann Arbor, MI 48108

We are thrilled to announce the 2nd ASXL Conference at the University of Michigan, Ann Arbor!

Below please find the agenda for the July 19-21 conference and register by July 5. Feel free to contact Laura Badmaev ( with any questions.

For families that plan to attend virtually via livestream and/or live polling, please also register for this conference.

VOLUNTEERS NEEDED! Please sign up here:

We hope to see all of you in July!


AЯRE Foundation

Medical and scientific conference for ASXL community of families, researchers, and professionals



Friday, July 19th

Family Day

  • Meet & Greet - Opportunities to connect with other ASXL families and break out by syndrome
  • Informational Workshops
  • Parent Panel
  • Equipment & Therapy Exhibits
  • ASXL Family Dinner


Professional Day (Scientists & Researchers)

  • Genetics
  • Modulation of H2A Monouniquination and Targeting
  • Developmental Models and Mechanisms
  • Models to Investigate Clinical Features


Saturday, July 20th - Medical Research & Family Day

Guest Presentations

  • Comprehensive Evaluation of Clincial Features for ASXL Related Disorders
  • Gastroenterology & Growth
  • Sleep
  • Genetics
  • Pallataive Care
  • Ears/Nose/Throat
  • Endocrinology
  • Behavioral issues

Break out sessions

  • Focus groups to share experiences on different subjects with specialist facilitators
  • Q&A with medical specialists from guest presentations


  • Simons VIP & ASXL Registry - sample collection
  • Registry Enrollment


  • Catered lunch for families and professionals
  • Family Dinner - Each ASXL Syndrome group will have a separate gathering