🌸 Our Spring 2026 newsletter is here! Explore research updates, scientific outreach, community stories, family resources, and ways to stay connected with Simons Searchlight. 💙
Read now: https://t.co/sNCH7rZziW
#SimonsSearchlight#RareDiseaseResearch
💫 Meet Liz Spitzer, PhD, Co-Founder & COO of the DYNC1H1 Association.
“Find the people that understand this life.” 🩵
In our latest Leading the Way interview, Liz shares her rare disease advocacy journey & hopes for the #DYNC1H1 community.
Read more: https://t.co/AE5e7DMBTV
“Take it one day at a time, and it’s ok to feel all of your emotions.” 💙
Lindsay Allen shares her family’s journey raising Brock, her 17-year-old son with 16p11.2 duplication syndrome.
Read their story: https://t.co/x1GYMPNWyR
#SimonsSearchlight#16p112Duplication
💙 Every person counts, today and over time. Thanks to our amazing community, Simons Searchlight has reached 83,400+ completed surveys! Your participation helps advance research on rare genetic neurodevelopmental conditions. 🧬
Complete pending surveys: https://t.co/opCMbNwx00
🧬💙 Our #SimonsSearchlight genetic counselors review genetic reports, answer community questions, and create lay-friendly resources & genetic condition guides to help families and advance research.
💡 https://t.co/c0Z7XGbxcy
#RareDiseaseResearch#CareForRare
🎉 Major milestone for Simons Searchlight — we’ve reached 10,000+ registered participants with genetic variants worldwide! 🌍🧬
Thank you to every family and individual whose continued participation powers research, deepens understanding, and helps shape future discoveries. 💙✨
📢📽️ Have you watched our video that walks you through the registration steps for joining Simons Searchlight?
If you're new to our community or need a refresher on how to sign up for research, this video is for you.
Learn more: https://t.co/K80PuzUBiQ
We want to hear from our community 💙 As young people w/ rare genetic conditions reach adulthood, families face important decisions & your experience can help guide others.
Share your story in our Understanding Pathways to Adulthood survey:
https://t.co/tT05MWIYFp
#CareForRare
Great few days at the American Academy of Neurology Annual Meeting 2026! 🧠
The Simons Searchlight team was proud to exhibit and connect with clinicians and researchers about advancing rare genetic research.
💙 Families: your participation drives discovery.
#AAN2026#Neurology
💙 “This genetic condition is a part of you but is not the whole you.”
The White family shares their journey w/ TAOK1-related syndrome—participating in research to help bring answers & hope to future families. 🧬
Read their story 👇
https://t.co/nwuDFySuu0
#TAOK1#CareForRare
🎉 Celebrating 10 years of @SPARKforAutism. Wendy Chung—PI of SPARK & Simons Searchlight—highlights 10 ways SPARK has advanced autism research. 🧠
🔗 Watch: https://t.co/EdXPEA18HO
#AutismResearch
📢 Updates to Simons Searchlight genetic community webpages.
Our pages for 184 genetic conditions are continually updated—with new data and gene guides to explore. 🧬
💡 Check out the latest resources: https://t.co/LDQSrI5kip
#SimonsSearchlight#RareDiseaseResearch
🧬 Did you know? 80% of rare diseases have a genetic cause.
#SimonsSearchlight studies 160 gene changes + 24 CNVs linked to rare neurodevelopmental disorders.
On #NationalDNADay, we celebrate the impact of genetic research.
💡 https://t.co/c0Z7XGbxcy
#Genetics#DNA
📊 Research participation update.
Since the start of 2026, nearly 750 new participants with genetic variants have joined #SimonsSearchlight. 🧬
Thank you to our patient advocacy partners for helping grow this community. 💙
🔗 https://t.co/aamYNlNmyM
📈 https://t.co/chFaJUSuMu