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

5255

REGISTERED

Participants with genetic variants registered

4856

CONSENTED

Participants consented to participate

3727

APPROVED

Genetic lab reports approved

51412

SURVEYED

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.

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How to Join

Please follow the steps below.

step 1

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

Update us every year and continue your participation

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News and Updates

Video

Simons Searchlight Genetic Counselors Supporting Our Participants

Meet some of our Simons Searchlight genetic counselors.

Family Story

Teddy's Story Living with a 16p11.2 Microdeletion

Learn more about Teddy, a 5-year-old with a 16p11.2 Microdeletion.

Data

New Simons Searchlight Seizure History Survey Results Now Available

Get important seizure information for your genetic condition.

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Follow Our Progress

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

Explore

Community

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

Expertise

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

Knowledge

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.

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