Driven by Science. United by Hope.
To create scientific breakthroughs for rare genetic neurodevelopmental disorders, families and scientists must come together. Simons Searchlight is an ambitious research program that is creating an ever-growing database and resource network. Families like yours are the key to making meaningful progress.join us today
Simons Searchlight studies genes that cause rare 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 150 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 more
How to Join
Please follow the steps below.
Sign up online.
Provide your genetics lab report.
Schedule a medical history phone call with a genetic counselor.
Fill out surveys.
Provide a blood sample if you are interested
Updates every year
Follow Our Progress
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Simons Searchlight gives rare patients a unified voice!
Every step we take, every test we do, every survey we fill out....all leads to more information. This data can be studied and processed into real life-changing information.
Connect with others on private Facebook groups. Find your genetic community’s webpage and select “Support Resources”.More
Check out videos on our video library to hear insights from our geneticists, scientists, and staff.More