The Inaugural ATRX Research Alliance
Scientific & Family Conference
April 22–24, 2026 Renaissance Columbus Downtown Hotel Columbus, Ohio, USA For the first time since its inception in 2021, the ATRX Research Alliance will bring together families, researchers, clinicians, and partners from across the global ATR-X community to gather for a conference focused on connection, collaboration, and advancing research for ATR-X Syndrome.
Why This Conference
Families affected by ATR-X Syndrome support one another in many meaningful ways – through shared experience, care, advocacy, and acceptance. The ATRX Research Alliance was established to focus specifically on advancing scientific research, with the goal of improving the quality of life for individuals living with the syndrome. This conference complements the broader ATR-X community by creating a research-focused space that welcomes families and partners from around the world. Progress happens when support, acceptance, and research move forward together.
Why Attend in Person?
Attending in person offers a uniquely meaningful experience for families. In Columbus, you’ll have the opportunity to:
- Hear directly from leading ATR-X researchers and clinicians
- Learn about the recommended clinical management of ATR-X
- Engage in live discussions and ask questions
- Connect with other families who share similar journeys
- Participate in family-centered programming
- Support research efforts, if you choose
Virtual attendance will be available for those unable to travel, but in-person participation allows for deeper connection and collaboration.
Supporting Research—With Choice
Families attending in person may optionally participate in research activities, including the opportunity for their child to donate a blood sample to support ATR-X research. Participation is always:
- Voluntary
- Respectful
- Guided by informed consent
Families may participate in all, some, or none of the research opportunities offered. Every family’s comfort level and priorities are respected.
Conference Overview
(Detailed agenda posted approximately 30 days before the event) Day One – Understanding ATRX & Research Progress The first day of the conference will focus on helping families better understand ATRX syndrome. Topics will include how the ATRX gene was discovered, how changes in the gene affect our children, and what researchers are learning through laboratory and preclinical studies. Families will also hear about promising therapeutic approaches currently being explored and will have opportunities for in-person engagement with the research community. Day Two – Hope, Collaboration & the Path Forward The second day will center on hope and collaboration between families, researchers, and advocacy organizations. Sessions will cover how families can participate in registries and research studies, what natural history studies mean for the ATRX community, and how progress in related genetic conditions may inform future treatments for ATRX syndrome. The day will conclude with a panel discussion bringing together leading experts to discuss next steps and answer high-level questions. Day Three – Family Connection & Community Building The final day will be dedicated to families and caregivers, offering a relaxed, welcoming environment focused on connection, support, and shared experiences within the ATRX community. Disclaimer: This agenda is preliminary and subject to change as speakers and session details are finalized.
Registration for In-Person Attendance
Conference registration fee: Waived (Actual cost of attendance is approximately $500 per person and is covered by ATRX Research Alliance supporters.)
Register to attend in-personVirtual Attendance
Virtual registration is available for families unable to attend in person. While not all sessions can be guaranteed for broadcast, we will stream and record as many as permitted.
Register for Virtual Attendance
Inclusive Childcare
Childcare will be provided by KiddieCorp, a nationally recognized provider with over 39 years of experience supporting children of all abilities, including children with special needs.
- Available Wednesday & Thursday
- Subsidized cost: $30 per child per day
Hotel Accommodations
Renaissance Columbus Downtown Hotel Conference rate: $165/night (Run of House) Booking deadline: March 31, 2026 For ADA-accessible rooms, please contact the hotel directly: (614) 228-5050
Virtual Attendance
Virtual registration is available for families unable to attend in person. While not all sessions can be guaranteed for broadcast, we will stream and record as many as permitted.
Register for Virtual Attendance
Moving Forward—Together
The ATRX Research Alliance is committed to collaboration across the global ATR-X community. We are honored to host this first Scientific & Family Conference and hope you’ll join us—whether in person or virtually.
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