Simons Searchlight is an initiative that focuses on better understanding genetic neurodevelopmental conditions. It’s a research program designed to gather information from individuals who have rare genetic changes linked to these conditions, including autism and developmental delays. The program aims to provide families with resources and information, connect them with the research community, and promote the understanding of the impact of these genetic changes. Simons Searchlight collaborates with families, clinicians, and researchers to collect data, which includes medical history, developmental milestones, and current health information, to advance scientific knowledge and potentially lead to more effective treatments and supports.

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Research & Family Meetup

Denver, Colorado, December 4th, 2026. This December, MED13L families will gather in person at the Grand Hyatt Denver. The day brings our community together around the latest MED13L research and the chance to spend real time with one another. Early bird pricing available!