Full recording of Friday clinician sessions (October 10, 2025) at Facing Heterotaxy Together 2025. Individual session recordings are also available.

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.

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.

Aimee Lybbert, MSW, LSWAIC, helps us understand the implications of complex medical conditions like Heterotaxy on neurodevelopment and shares strategies for helping children cope.

Second opinions can change the course of treatment and help find answers. In this session, Rene Harrell provides insight on how to obtain opinions from other hospitals.

Heterotaxy affects the whole body and the whole family, and requires a care team that takes this big picture perspective into account. In this session, Dr. Shih-Ning Liaw and Chelsea Heneghan, MSN, CNP, part of the palliative care team at Boston Children’s Hospital, will explore how palliative care fits into this holistic approach. They’ll discuss what palliative care is, how it differs from and complements other types of medical care, who is eligible to receive it, and how families can access these services.

Heterotaxy affects the whole body and the whole family, and requires a care team that takes this big picture perspective into account. In this session, Dr. Shih-Ning Liaw and Chelsea Heneghan, MSN, CNP, part of the palliative care team at Boston Children’s Hospital, will explore how palliative care fits into this holistic approach. They’ll discuss what palliative care is, how it differs from and complements other types of medical care, who is eligible to receive it, and how families can access these services.