Simons Searchlight | Driven by science. United by hope.

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 genetic neurodevelopmental disorders. The study is international, and families can participate in several languages. Learn More

7181

REGISTERED

Participants with genetic variants registered

6619

CONSENTED

Participants consented to participate

5315

APPROVED

Genetic lab reports approved

72420

SURVEYED

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

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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News and Updates

Family Story

The Shacklock-Aylings' Journey with 7q11.23 Duplication Syndrome

Discover the inspiring story of the Shacklock-Aylings.

Data

New Quarterly Data Reports - October 2024

Our latest report offers updated insights and fresh data on Simons Searchlight participants!

Patient Advocacy

Leading the Way: An Interview with Emily Amerson

Learn about the inspiring work of Emily Amerson, President of CTNNB1 Connect & Cure.

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Stay connected with Simons Searchlight

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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

Explore

Community

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

Expertise

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

Knowledge

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