Creating a community of support and raising awareness of
CUL3-related neurodevelopmental disorder.
Spotlight
Shine Your Searchlight Campaign 2026
English
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Parents + Simons Searchlight = Progress
How to Register with Simons Searchlight
How to Add Your Clinical Research ID (CRID)
How to Locate Your Genetic Lab Report
The Importance of Sharing Annual Medical History
The Importance of Data and
Biospecimen Collection
How to Claim Simons Searchlight Rewards for Completing Surveys
Family News
We are pleased to share that Christelle, a mother of a son with CUL3-related neurodevelopmental disorder, has written a book titled 'Viens, on est plus forts que la maladie'. In this thoughtful account, Christelle reflects on her journey raising her son with a rare genetic condition. Her story highlights the challenges, resilience, and the support of family, offering insight and inspiration to others facing similar experiences. This book is especially meaningful for families affected by CUL3-related neurodevelopmental disorder, providing a relatable and encouraging perspective. The book is available in it's original French, as well as an English translation.
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Learn more on instagram: @christelle.leroy.autrice
News / Blog
Explore our blog for updates, resources, and insights about CUL3-related neurodevelopmental disorder
