Simons Searchlight

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.

🧬💙 New family-friendly research summaries are live! See how your participation is advancing research—and why annual updates matter for tracking change over time. ➡️ Explore: bit.ly/Simons_Searchl… #RareDiseaseResearch #SimonsSearchlight #Genetics

📊 New Simons Searchlight quarterly reports are here! Insights from 78 genetic communities, including 5 new groups. Powered by families who share annual updates over time, helping researchers track change + accelerate discoveries 💙 🔗 bit.ly/QuarterlyRepor…

📢 The ORCA survey helps researchers understand communication in rare neurodevelopmental conditions—including speech, gestures & AAC. 💙 Every response helps ensure all voices are represented. 🕒 10–15 min | no clinician needed 🎁 Earn a gift card 🔗 bit.ly/Simons_Searchl…

📣 April is Autism Awareness & Acceptance Month! Explore @SPARKforAutism’s “Autism Topics” hub—articles, webinars & family stories on #autismresearch: sparkforautism.org/portal/page/au… 🔎 Some w/ genetic findings may be invited to join @S_Searchlight to continue their research journey.

🎉 Celebrating #OCNDSAwarenessMonth with @csnk2a1org! We have 192 participants with OCNDS in #SimonsSearchlight 💙 📚🔬 Explore research, data reports, gene guides & advocacy resources: bit.ly/SimonsSearchli… #RareDiseaseResearch #CareForRare #CSNK2A1 🧬

✨ For the Love of Raylin, and the Future of Research ✨ Raylin lights up every room she enters. Her parents, Christie and Brigg, share their journey w/ Simons Searchlight from the first diagnosis through fifteen years of research partnership. 🧬💙 ➡️ simonssearchlight.org

This #WorldAutismDay, we're celebrating the thousands of families who are part of our @SPARKforAutism and @s_searchlight cohorts. Thank you for helping us advance our understanding of autism and related neurodevelopmental disorders! #WAAD #AutismAcceptanceMonth

🧬💙 Today we recognize #WorldAutismDay Did you know? 44% of Simons Searchlight participants w/ a genetic diagnosis also have autism—highlighting the role of genetics in neurodevelopmental disorders. ➡️ Learn more: SimonsSearchlight.org #AutismAcceptanceMonth #AutismResearch

🧬💙 Today we celebrate #PPP3CAAwarenessDay w/ our friends at PPP3CA Hope Foundation. 58 individuals with PPP3CA-related syndrome are part of #SimonsSearchlight—helping advance research. ➡️ Learn more + explore resources: bit.ly/PPP3CAReport #RareDiseaseResearch #PPP3CA

🧬💙 March is #DevelopmentalDisabilitiesAwarenessMonth 7,200+ individuals w/ rare genetic variants are enrolled in Simons Searchlight. Ongoing participation helps researchers understand change over time & drives discoveries for the future. 🌐 bit.ly/Genes_We_Study #DDAM2026

💙 Have you supported a dependent into adulthood? Share your story with #SimonsSearchlight Your experience can help support families, shape resources, and strengthen lifelong research. ➡️ Share here: bit.ly/Transition_To_… #RareDiseaseResearch #CareForRare #PatientAdvocacy

💜 March 26th is #PurpleDay! We stand with the epilepsy community — 29% of our CNV participants and 46% with a single gene condition experience seizures. Learn more & find support: simonssearchlight.org #EpilepsyAwareness #SimonsSearchlight #CareForRare #RareDiseaseResearch

🌍💙 Proud to partner with patient advocacy groups to advance rare disease research! Check out our Partnership Webpage to learn how we collaborate, and our Participation Dashboard for real-time metrics on our genetic communities: bit.ly/PAG_Partnershi… #CareForRare

💙 Hannah and her son both live with EBF3-related and AUTS2-related syndromes. As one of the few known adults with both conditions, she's participating in research to help find better treatments. ➡️ Read their story: bit.ly/Family_Story_C…

🧬💙 Celebrating #CHAMP1AwarenessDay with @CHAMP1ResearchFoundation and @CHAMP1genemutation! We have 70 participants with CHAMP1-related syndrome in #SimonsSearchlight. ➡️ Resources, data & advocacy support: bit.ly/SimonsSearchli… #RareDiseaseResearch #CHAMP1 #CareForRare

Your survey responses help researchers better understand rare diseases & you may have gift cards waiting as a thank-you! 🎁 ✅ Claim your reward: bit.ly/Simons_Searchl… 🎥 How-to video: bit.ly/HowtoClaimRewa… The more families who complete surveys, the more we can learn. 💙

🧬💙 Celebrating #GRIN2BAwarenessWeek with @Grin2bFoundation, @GRINEurope & @CureGRIN! 211 participants with #GRIN2B disorder are in #SimonsSearchlight. 📚 Resources, data & advocacy support → bit.ly/SimonsSearchli…

🌟 Our “Leading the Way” series spotlights inspiring PAG leaders. 💙 Meet Jordana Koch, President & Founder of the KMT2C Foundation, sharing her journey into rare disease advocacy & the progress of the #KMT2C community. Read more: bit.ly/Leading_The_Wa… #PatientAdvocacy

What an incredible few days at #ACMG2026! 🧬 So grateful to connect with the genetics community, share how researchers can access deidentified rare disease data & biospecimens through SFARI Base, and highlight resources that keep families engaged in research. 💙 #ACMGMtg26

Your data and blood samples are driving research, improving care, and accelerating breakthroughs for rare genetic conditions. 🧬 💛 Learn more: bit.ly/Searchlight_Da… #SimonsSearchlight #GeneticsResearch #RareDiseaseResearch #SimonsSearchlight #RareDiseaseAwareness