Simons Searchlight | Driven by science. United by hope.

Father and mother holding child smiling

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.

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About Us

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 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.

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How to Join

Please follow the steps below.

step 1

Sign up online

step 2

Provide your genetic lab report

step 3

Share your medical history

step 4

Fill out surveys

step 5

Provide a blood sample if you are interested

step 6

Update us every year and continue your participation

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Participant Voices

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.

Stacey, Parent

Every time I complete a survey, I know I am doing my part in advancing research to help my child.

Andrew, Parent

There's been an unexpected amount of peace from sharing our struggles and victories with others.

Katie, Parent

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!

Vanessa, Parent

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.

Rhiannon, Parent

The first myth about caring for someone with special needs is that you are alone. You are not.

Tony, Parent



Connect with others on private Facebook groups. Find your genetic community’s webpage and select “Support Resources”.


Visit our video library to hear insights from our geneticists, scientists, and staff.


Explore dedicated pages for each genetic condition that we study.

Ready to share your unique insights?
You could hold the clues scientists need to make progress and find answers.
join us today