Celebrating 15 Years of Simons Searchlight: Our Top 15 Milestones

Over the past 15 years, Simons Searchlight, funded and supported by the Simons Foundation through the Simons Foundation Autism Research Initiative (SFARI), has grown from a small, family-led effort into one of the world’s largest international registries for rare genetic neurodevelopmental conditions.

What began in 2010 as a collaboration among a handful of families and researchers has expanded into a global community spanning 90+ countries and representing more than 185 genetic conditions. Together, families, patient advocacy groups, clinicians, and researchers have helped build a research resource that continues to accelerate scientific understanding and meaningful discoveries.

As we celebrate this anniversary, we’re reflecting on 15 key milestones that highlight how far we’ve come: from early family meetings and the launch of online participation to expanded data collection, impactful research partnerships, and worldwide engagement.

This progress has only been possible because of the families who share their experiences, the researchers who turn data into insights, and the advocacy leaders who bring communities together.

👉 Explore the full list of our Top 15 Milestones and join us in looking ahead to the next chapter of progress.