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

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 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.

step 1

Sign up online.

step 2

Provide your genetics lab report.

step 3

Schedule a medical history phone call with a genetic counselor.

step 4

Fill out surveys.

step 5

Provide a blood sample if you are interested

step 6

Updates every year

join us today

Follow Our Progress

Sign up for the Simons Searchlight newsletter.

Participant Voices

Simons Searchlight gives rare patients a unified voice!

Farhad, 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



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


Check out videos on our video library to hear insights from our geneticists, scientists, and staff.


We have 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