Events & Advocacy
Conferences
Heterotaxy Connection conferences unite families and clinicians in shared spaces, both online and in person, for meaningful co-learning, collaboration, and support.
Our Next Conference
September 23-24, 2026 for Clinicians and Researchers
September 25, 2026 for Families
8am-2pm (PDT) daily
Virtual Only
The 2026 Facing Heterotaxy Together Conference will draw the leading experts in Heterotaxy across a multitude of specialties.
To be kept up-to-date on conference offerings and registration, sign up to receive our emails.
FUTURE CONFERENCES
2025 Conference
In partnership with the Benderson Family Heart Center at Boston Children’s Hospital, and collaboration with Heterotaxy Research and Clinical Care Collaborative (HRC3), Heterotaxy Connection hosted their first ever in-person combined scientific and family conference.
Full recording of Friday clinician sessions (October 10, 2025) at Facing Heterotaxy Together 2025. Individual session recordings are also available.
Dr. Steve Spurgin moderates a Q&A session following the fourth session of clinical presentations on Friday, 10 October, at Facing Heterotaxy Together 2025.
Dr. Jo Wilson reviews vaccination and antibiotic prophylaxis in the Heterotaxy population.
A comprehensive review of assessment for immune function in Heterotaxy with Dr. Douglas McDonald.
A discussion of the considerations that need to be reviewed before opting for abdominal surgery in the presence of Heterotaxy by Dr. Benjamin Zendejas-Mummert.
The Life of a Ciliary Gene, with Dr. Natasha Corbitt.
Dr. David Schidlow moderates a Q&A session following the third session of clinical presentations on Friday, 10 October, at Facing Heterotaxy Together 2025.
Dr. Elizabeth DeWitt, an electrophysiologist at Boston Children's Hospital, shares innovations in intraoperative electrophysiology mapping for cardiac surgery.
Unique anatomy can pose a problem for heart transplants in Heterotaxy patients. Dr. Ryan Butts shares current statistics and outcomes for heart transplants in Heterotaxy.
Dr. David Hoganson (Boston Children's Hospital) shares cutting-edge technology that is revolutionizing pre-operative planning for both single ventricle and complex biventricular cardiac repairs.
Dr. Martina Brueckner helps us make sense of the link between genetics, ciliary function, and congenital heart disease.
Dr. Ken Haver moderates a Q&A session following the second session of clinical presentations on Friday, 10 October, at Facing Heterotaxy Together 2025.
Dr. Alan Brown (Harvard Medical School) studies cilia in his lab, and shares with us about how we use structural biology to get at the root of cilia.
Dr. Adam Shapiro from McGill University in Montreal discusses different testing modalities to determine ciliary function in Heterotaxy.
A look at new research with Dr. Yadira Rivera-Sanchez from the University of Texas Southwestern Medical Center.
A discussion in ciliary pathophysiology with Dr. Cecelia Lo from University of Pittsburg School of Medicine.
Alison Chandra shares part of her family's journey with Heterotaxy and shares things families wish clinicians knew when dealing with Heterotaxy patients.
Sarah shares with the clinicians her story with her Heterotaxy Hero, Matthew.
Join cardiovascular geneticist Dr. Elle Geddes as she discusses developmental aspects of Heterotaxy and how sidedness actually happens.
Dr. Sarah Morton discusses considerations in prenatal diagnosis and counseling for Heterotaxy.
In this panel, Sarosh Batlivala, MD, MSCI, Jo Wilson, MD, Elle Geddes, MD, and Adam Shapiro, MD, discuss some of the major unanswered questions facing Heterotaxy researchers and clinicians.
Dr. Tal Geva walks through definitions as we seek to classify what Heterotaxy really is.
Full recording of Thursday afternoon family sessions (October 9, 2025) at Facing Heterotaxy Together 2025. Individual session recordings are also available.
Full recording of Thursday morning family sessions (October 9, 2025) at Facing Heterotaxy Together 2025. Individual session recordings are also available.
Beth Gore from the Oley Foundation addresses some of the unique challenges that come with nutrition and feeding in the presence of Heterotaxy.
Learn from Dr. Douglas McDonald as we seek to understand up-to-date recommendations for immunizations and treatment protocols. This includes what, when, and why antibiotic prophylaxis is used, and considerations important when deciding to continue or discontinue treatment.
Learn about various methods and tools to assist with airway clearance for those with and without Primary Ciliary Dyskinesia.
Heterotaxy Connection Executive Director Necia Sabin details our partnership with Citizen Health in collecting natural history data that patients can query as needed.
Rene Harrell teaches about the difference between IEPs and 504 plans and helps us understand how to leverage these plans to help students be successful in school.
In this panel discussion, Karli Richards, Monica Bloom, Maggi Curry, and Cristina Co share their journeys to growing community in a journey that can often be so isolating.
