Simons Searchlight

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185 videos

To create scientific breakthroughs for rare genetic neurodevelopmental disorders, families and scientists must work together. Simons Searchlight is building ...

Latest Videos

It’s Never too Early for Research

Simons Searchlight Virtual Connect Insights, Impact, and Collaboration - February 2026

A Thank You Message for Rare Disease Awareness Month 2026 Dr. Wendy Chung

For the Love of Raylin, and the Future of Research

How to Create and Add Your CRID to Your Simons Searchlight Account

How to Engage Families at Research Conferences SFARI & Simons Searchlight Webinar

Rare Disease Day 2025 & 15 Years of Impact with Dr. Wendy Chung!

Parents + Simons Searchlight = Progress

Simons Searchlight and Jordan’s Guardian Angels Partners in Accelerating Science

Ask Simons Searchlight - Self Feeding

Ask Simons Searchlight - Changes in Routine

Ask Simons Searchlight - Sleep Challenges

Simons Searchlight What's Next Is Not So Far Away

How to Register in Simons Searchlight (a step by step tutorial)

How Simons Searchlight and Patient Advocacy Groups Accelerate Scientific Breakthroughs Together

How to Claim Your Simons Searchlight Rewards (for completing surveys)

Journey of Hope Families Share Their Stories with Simons Searchlight

Q&A with Dr. Cora Taylor Behavioral Interventions for the Simons Searchlight Community

The Impact of Participation and Data in Genetic Research Insights from SFARI Researchers & Staff

What is Apraxia of Speech and How Should We Treat It

Q&A with Simons Searchlight Genetic Counselors Navigating Diagnoses, Genetic Testing, and Resources

Understanding the Importance of Sharing Your Annual Medical History

Happy Rare Disease Awareness Month 2024 from Dr. Wendy Chung

SETBP1-HD Community Project Research Project SCoRes Overview and Updates

Gait Analysis Using Computer Vision - A Progress Report

Speech, Language, and Cognitive Phenotype in MED13L

Dr. Thomas Frazier's Webcam and AI Study Drives Discovery

How to Read the Vineland Adaptive Behavior Scales Growth Chart

Ask Simons Searchlight - Pathogenic vs. VUS

What is Simons Searchlight Explained by Dr. Wendy Chung