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.

🎥✨Learn how to create your Clinical Research ID (CRID) and add it to your Simons Searchlight dashboard. 🧬 CRIDs help connect deidentified data across research studies to advance discoveries while protecting privacy. 💙 Please watch this video & share:

✨ Your data fuels discovery! The surveys and biospecimens you share help advance research into rare genetic neurodevelopmental conditions. 🔬 Learn more: https://t.co/ghifUS8Q8f https://t.co/XDj6utXzh4 Thank you for your contributions. 💙

Celebrating #XiaGibbsAwarenessWeek2025 with our partners at Xia-Gibbs Society! 🌟 We’re proud to have 20 participants with Xia-Gibbs Syndrome registered in #SimonsSearchlight. Every family that joins helps advance #AHDC1 research. 🧬💛 Learn more: https://t.co/78zy3hrTZw

🌟 #GratitudePost! Thank you to our participants, PAGs, families, and scientists for lighting the way in rare genetic neurodevelopmental research. Every survey and story brings us closer to answers. Your dedication truly makes a difference. 🧡 #SimonsSearchlight #CareForRare

💙 Family Spotlight: The Heidarizadehs’ Journey with 1q21.1 Deletion Syndrome. Despite limited services & daily challenges caring for their daughter, they share their story to help other families & advance research. Read more ➡️ https://t.co/Q1duZ8ve48 #1q211 #PatientAdvocacy

We had a great time exhibiting at #NSGC2025 in Seattle! 🧬 We connected with nearly 600 genetic counselors and healthcare professionals committed to advancing rare genetic neurodevelopmental research. Our new family guide was a big hit! Get yours here: https://t.co/RzZuKYase8

📢 Read our Fall Simons Searchlight Newsletter for updates: • CAC impact on research • New data reports + CRID updates • Complete surveys + claim rewards • New resources incl. Dr. Chung’s podcasts + our Family Guide • New Leading the Way story 🔗 https://t.co/bHTYqRKIpR

🌍 Speak English, Dutch, French, German, Italian, Portuguese, or Spanish and have a condition on our study list? Join Simons Searchlight! Advance research, help scientists, connect with families, and earn gift cards for completing surveys. Learn more: https://t.co/CGWgbnB80z

🎉 Did you know completing Simons Searchlight surveys earns rewards? Each survey helps researchers track changes over time and deepen understanding of rare genetic neurodevelopmental conditions. New reward options now available! 👉 https://t.co/opCMbNwx00 #SimonsSearchlight

🎉 Celebrating 16p11.2 Genetic Variation Day with the 16p11.2 Foundation! We’re proud to have 947 participants registered in #SimonsSearchlight with a 16p11.2 deletion or duplication diagnosis. 🧬 Learn more and find resources: https://t.co/QxnfjfauJr https://t.co/vKDNj87149

In honor of #GeneticCounselorAppreciationDay, we’re celebrating our amazing genetic counselors who guide families through their research journey with care. 🧬💙 Check out their new resource, A Family Guide: Understanding Genetic and Clinical Diagnoses: https://t.co/RzZuKYase8

🌟 New SFARI Grant! The Simons Foundation Autism Research Initiative (SFARI) is offering $2.5K–$15K to support Patient Advocacy Group Family Conferences for Simons Searchlight gene/CNV groups. Apply by Mar 5, 2026: https://t.co/QzJAxMAgGy #SimonsSearchlight #RareNDD #Autism

📢 Exciting updates to Simons Searchlight’s genetic community webpages! Our genetic counselors review the latest research to keep gene pages and guides current, helping families stay informed. 🌟 Explore updates: https://t.co/qpXd2haZ9B #GeneChat #CareForRare #PatientAdvocacy

💜 This #EpilepsyAwarenessMonth, Simons Searchlight stands with families & researchers learning more about seizures in rare genetic conditions. 29% w/ copy number variants & 46% w/ single-gene conditions report seizures. 🔗 Learn more about our research: https://t.co/c0Z7XGbxcy

🧬🌎 Simons Searchlight partners w/ families, researchers & advocacy groups worldwide to collect high-quality data on rare genetic neurodevelopmental conditions — building a large, de-identified resource to drive discovery. 💙 🔗 https://t.co/c0Z7XGbxcy | https://t.co/xSIUecxP9y

📣 We’re still on the road through 2025! Catch the Simons Searchlight team at these upcoming conferences: 🧬 NSGC 2025 – Booth 511 | Seattle, Nov 7–9 ⚡️ AES 2025 – Booth N546 | Atlanta, Dec 6–8 Stop by to explore our data, tools & research collaborations! 💙

📊 New Simons Searchlight quarterly reports are live! Explore fresh data from 74 genetic communities — including first reports for EP300 & 17q12 duplication. Thanks to families who share their stories—you make #FamilyPoweredResearch possible. 💙 🔗 https://t.co/LUjRcrsdAz

🌟💛 New 'Leading the Way' interview! Jennifer Sills & Dr. Gabrielle Rushing of the CSNK2A1 Foundation share how collaborations like Simons Searchlight drive discovery, innovation & hope for families with #OCNDS. 🔗 https://t.co/HskYrdiOWC #CSNK2A1 🧬 @csnk2a1org

📊💙 Of Simons Searchlight participants who shared medical history, 33% of individuals with a CNV condition and 25% with a single-gene condition have #ADHD. Understanding these patterns helps researchers see the bigger picture over time. #ADHDAwarenessMonth

🌍 The Simons Foundation & Simons Searchlight teams joined the European College of Neuropsychopharmacology Congress in Amsterdam — connecting w/ researchers & clinicians advancing brain & rare disease research. 💜 Connect w/us: https://t.co/c0Z7XGbxcy & https://t.co/xSIUecxP9y