Dr. Hsiao-Tuan Chao and the Duncan Neurological Research Institute host 2024 EBF3 HADDS International Family Conference

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On July 24-26, Dr. Hsiao-Tuan Chao and the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital hosted the 2024 EBF3 HADDS International Family Conference in the Blue Bird Circle Auditorium. 

Dr. Chao is a physician-scientist in Child Neurology, Assistant Professor in Pediatrics, Molecular and Human Genetics, and Neuroscience, and investigator with the McNair Medical Institute and the NRI. Since the initial recognition of the EBF3-related condition in 2016, Dr. Chao and her team have been leading the research on this syndrome to understand the full spectrum of the human condition and elucidate the disease biology with a goal to improve diagnosis, prognosis, and therapeutic interventions. 

In addition, Dr. Chao and her team have built a productive bilateral research partnership with the family community and the EBF3 HADDS Foundation. The EBF3 HADDS Foundation is instrumental providing the resources for families impacted by this syndrome to learn about the latest research advances, participate in research studies, access the EBF3-related conditions consultation at Texas Children’s Hospital, interface with the international family community, and promote global outreach. 

The 2024 EBF3 HADDS International Family Conference is the third biennial conference on the disorder hosted by Texas Children’s Hospital and is the second conference held at the NRI. More than 250 attendees from four continents joined this largest-ever gathering. Some of the countries represented in person included Brazil, Netherlands, China, UK, Ireland, France, Italy, Canada, and the US. At the conference, 12 speakers, featuring scientists, physicians, psychologists, a genetic counselor and a patient advocate, discussed a variety of topics important to the patients and their families. Conference highlights included a global panel comprising young adults and adults with the condition sharing their life experiences, and a research panel with Dr. Chao’s team and collaborators discussing their work. The social events (including a pool party) and the EBF3-related conditions clinic at Texas Children’s Hospital provided opportunities for the families to closely interact with the physicians and researchers working at the frontline of EBF3-related conditions. 

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“We are deeply fortunate to partner the EBF3-HADDS Foundation and the family community. These families are the heart and soul of our research efforts. They are our inspiration and our heroes. The biennial international family conference is a testament to the generosity and support of the families for their community and for research. We are grateful to be part of their journey and to partner with them to advance biomedical knowledge, diagnosis, prognosis, and care for these wonderful children and adults,” said Dr. Chao.

During the conference, Dr. Chao also announced a newly-awarded $3M NIH R01 research grant from the National Institute of Neurological Disorders and Stroke to advance EBF3 research efforts. This award continues the NIH-supported research for EBF3-related conditions conducted by Dr. Chao and her team since 2018 through the NIH Director’s High Risk, High Reward Early Independence Award. This exciting news brought new hope to the international EBF3 HADDS community.