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.

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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

5414
REGISTERED

Participants with genetic variants registered

3544
CONSENTED

Participants consented to participate

2667
APPROVED

Genetic lab reports approved

35201
SURVEYED

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.

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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

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News and Updates

News
A Message from the Simons Searchlight Genetics Team
The Simons Searchlight Genetics Team has a special message for our community.More
Webinar
LIVE Q&A: Ask a Simons Searchlight Genetic Counselor (5/25 at 12pm ET)
Simons Searchlight Genetic Counselors answer questions during Public Health Genetics Week!More
Family Story
Family Stories // Historias Familiares: Gabriel (CTNNB1)
Simons Searchlight shares the story of Gabriel and his family's journey.More
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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

Explore

Community

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

More
Expertise

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

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Knowledge

We have dedicated pages for each genetic condition that we study.

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