What is #SimonsSearchlight? A #research study looking at genetic changes associated with #autism and other #neurodevelopmental disorders. Over 200 #genetic changes (CNVs and genes) are included in this #study.

📊 Your Surveys Help Move Research Forward! For 15+ years, Raylin's family has contributed to research through Simons Searchlight. 💙🎥 Hear why they continue: bit.ly/For_the_Love_of_Rayli… Our next Data Release is expected Jan. 2027. Complete any surveys: bit.ly/Simons_Searchlight_Da…

💜 It's #HNRNPAwarenessWeek! We're highlighting 6 conditions supported by the HNRNP Family Foundation & studied by Simons Searchlight. 🧬 153 registered | 80 medical histories completed | 48 blood samples received Every family helps advance research! bit.ly/Genes_We_Study

💜 Great connections at #CNS2026 in Montréal! We hosted 40+ clinicians, researchers & trainees for a special event with Simons Searchlight PI Dr. Wendy Chung to spotlight our research program and Simons Foundation resources. 🧬 Together, we're advancing rare genetic research!

🧬 For 16 years, families have powered rare genetic research through Simons Searchlight. Every survey helps advance discoveries and future clinical trials. 💙 Every survey matters. Every family moves research forward. Stay engaged: bit.ly/Simons_Searchlight_Da… #RareDiseaseResearch

💙 Nothing beats connecting in person! Thank you to Reed’s Reach and CTNNB1 Connect & Cure for bringing our community together! We shared research updates, helped families w/surveys, and collected blood samples. These connections help move rare disease research forward! 💛

❓ Have questions about joining #SimonsSearchlight? Our long-term research helps scientists understand how rare genetic conditions change across the lifespan. 📊 Explore our FAQs on surveys, privacy, genetic testing, registration, and more! 📚 bit.ly/SimonsSearchlight_FAQ

💙 Meet the Oakleys! Kimberlee and her son James share the same #ANK3 genetic variant but have very different experiences. Their story highlights the importance of research, advocacy, and hope for better quality of life. ✨ Read their story: bit.ly/Family_Story_Oakleys

🌎 New Simons Searchlight Quarterly Reports are here! 📊 94 genetic communities now have reports, including 7 receiving their first! 💙 Thanks to families and advocacy groups for helping advance rare genetic research through continued participation. 🔗 bit.ly/Genes_We_Study

🌟 Our updated Transition to Adulthood resource page is here! Find resources to help navigate adulthood, plus guidance on the Transition to Adulthood Survey and adult consent to continue participating in Simons Searchlight. 💛 Learn more: bit.ly/Transition_To_Adultho…

🧬 Simons Searchlight has surpassed 10,800 registered participants! Long-term participation helps researchers understand how rare genetic conditions change over time. 💙 Already registered? Log in to your dashboard & keep your information up to date ➡️ bit.ly/Simons_Searchlight_Da…

🧡 Meet the Hoyrup family! Aude shares life with his daughter Elsa, who lives with #CTNNB1-related syndrome, and why their family participates in research. “I fill in each [research] survey and I wish all families would do the same.” 🔗 Read their story: bit.ly/Family_Story_Hoyrups

🎉 Today we’re celebrating #CACNA1CAwarenessDay! Thank you to the 22 families registered with #SimonsSearchlight whose participation helps move CACNA1C research forward. Explore GeneReviews, condition guides, advocacy resources & more: bit.ly/CACNA1C_Simons_Search… 💛 #CACNA1C

🧬 Already have a CRID? Add it to your Simons Searchlight account under Account Settings: bit.ly/Simons_Searchlight_Da… Don’t have one yet? Create your CRID at TheCRID.org, then add it to your account. #RareDiseaseResearch #CRID #SimonsSearchlight

📚 Your participation moves research forward! Simons Searchlight data has contributed to 144 scientific publications—helping researchers better understand rare genetic neurodevelopmental disorders. 🌐 Explore our lay-friendly summaries: bit.ly/Simons_Searchlight_Pu…

💙 Happening TODAY at 12 PM ET! Join Simons Searchlight and Carole Bakhos of 2villages for an interactive Zoom conversation on caregiver support, resources, and connection. Register: bit.ly/2VillagesWebinar #SimonsSearchlight #CaregiverSupport

🧬 Why does long-term research participation matter? Annual surveys help researchers understand how rare genetic conditions change with age and contribute to research that could lead to better treatments and support. 💙 Complete your surveys: bit.ly/Simons_Searchlight_Da…

🧬 Looking for info about a rare genetic condition? Explore gene guides for all 187 conditions we study, developed by our genetic counselors using current medical literature. Available to everyone, whether or not you participate in our research! 💛 🔗 bit.ly/Genes_We_Study

🎉 Happy #KleefstraSyndromeAwarenessDay! Together with Kleefstra syndrome Community and IDefine, we celebrate 54 participants registered in #SimonsSearchlight, helping strengthen rare disease research. 💛 Explore resources, data reports & more: bit.ly/EHMT1Report

Simons Searchlight is hitting the road this fall! CNS | Montréal | Oct. 14–17 NSGC | Baltimore | Nov. 10–14 AES | Denver | Dec. 4–8 PAGs, researchers & clinicians—stop by and say hi! We’d love to connect and share the latest from Simons Searchlight. 💙

Great week at #GlobalGenesRDDS! We learned how PAGs are partnering across registries, academia, biotech & pharma to move rare disease research forward—and hosted a fireside chat with Dr. Wendy Chung on strengthening Simons Searchlight’s role in the broader research ecosystem. 💙