Simons Searchlight | Driven by science. United by hope.
Driven by science. United by hope.
In order to create scientific breakthroughs for rare genetic neurodevelopmental disorders, families and scientists must come together. Simons Searchlight‘s mission is to shed light on these disorders by collecting high-quality, standardized natural history data and building strong partnerships between researchers, industry and families. Families like yours are the key to making meaningful progress.
join us todayAbout Us
Simons Searchlight studies genes that cause rare genetic neurodevelopmental disorders. The study is international, and families can participate in several languages. Learn More
Participants with genetic variants registered
Participants consented to participate
Genetic lab reports approved
Participant surveys completed
Genetic Conditions We Study
We study over 175 genes that cause rare neurodevelopmental disorders, and our list is always expanding. Join us if you or your family member have been diagnosed with one of these genetic conditions.
learn moreHow to Join
Please follow the steps below.
Sign up online
Provide your genetic lab report
Share your medical history
Fill out surveys
Provide a blood sample if you are interested
Update us every year and continue your participation
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Participant Voices
You could hold the clues scientists need to make progress and find answers.