In case y0u missed it: The inaugural Olivia’s Light Pediatric Rare Disease Conference

The inaugural Olivia's Light Pediatric Rare Disease Conference took place in June 2025 at the University of Virginia, with the aim to improve patient care for children and families impacted by a rare disease. The conference highlighted different aspects of the rare disease journey, with an emphasis on rapid broad genetic testing, particularly whole genome sequencing. The conference also highlighted other components of patient care, including, early recognition of genetic conditions, prenatal red flags, a novel pathway to access broad genetic testing, ethical considerations and communication strategies in consultation, facilitating shared decision-making, community outreach and education, as well as, the gaps and needs of patients and families.

The two-day event provided a collaborative and interactive experience between leading experts in pediatrics, parents and industry professionals. This collaboration created a welcoming environment for sharing insights and experiences.

Olivia’s Light Pediatric Rare Disease Conference is set to return in 2027 and will significantly impact the future of pediatric healthcare.