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 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 170 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 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
News and Updates
Follow Our Progress
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Simons Searchlight seems like an amazing way to create a large community and bring more research and awareness to many small communities that might not otherwise have such a big voice.
Every time I complete a survey, I know I am doing my part in advancing research to help my child.
There's been an unexpected amount of peace from sharing our struggles and victories with others.
I'd do anything to help my son have the best possible chance for a long and happy life including contributing his medical history and completing surveys in Simons Searchlight!
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.
The first myth about caring for someone with special needs is that you are alone. You are not.
Connect with others on private Facebook groups. Find your genetic community’s webpage and select “Support Resources”.More
Visit our video library to hear insights from our geneticists, scientists, and staff.More