NRXN1 Network

Autism and ADHD and NRXN1 deletion, oh my! Trying to make sense of your child's educational and medical diagnoses? Brenda Finucane, MS CGC, shines a light on why children might receive different diagnoses from different places, and how they all relate to each other.

Do you have questions about your child's challenging or perplexing behaviors? Ask anything of Cora Taylor, PhD, at the NRXN1 Family Conference. Link to register in comments 👇

Register now! nrxn1network.org/2026meeting

Early bird registration is now open for the NRXN1 Research and Family Conference Feb. 20-22, 2026! Check out the conference webpage to register, book a hotel room, and explore what Philly has to offer. nrxn1network.org/2026meeting

@OnceUponAGene ir.genedx.com/news-releases/…

March is Cerebral Palsy Awareness Month 💚 But how many kids and adults have a CP diagnosis that’s incomplete or descriptive? For years, we’ve been told we need to "educate doctors" about genetic testing. That’s great, but kids can’t wait for the system to catch up. Parents, YOU have the power to push for answers right now. If your child has CP but had no birth trauma and a clear MRI, genetic testing is a MUST. Too many families assume or are told they’ve had "all the testing," yet when asked about genetic tests, they almost always either don’t know if it was done or are unsure which ones. 💡 Here’s how we fix it: ✔️ Ask the right questions. ✔️ Demand genetic testing. ✔️ Push for answers. I’ve created a handout to help families take action. Print it. Share it. Post it. It is crucial we get these patients a complete diagnosis.

Today is #RareDiseaseDay. Although NRXN1 Deletion Syndrome is rare, one recent study suggests as many as 1 in 1400 people may have it— and many have never been diagnosed. Consider making a donation to NRXN1 Network in honor of Rare Disease Day! nrxn1network.org/donate

#ShineYourSearchlight✨ Your annual updates to Simons Searchlight help researchers understand how NRXN1 Deletion evolves over time, benefiting families like yours. 📊 Visit your dashboard to share updates and complete surveys: bit.ly/Simons_Searchl…

Today, February 16, is 🧬 NRXN1 Deletion Syndrome Awareness Day! Please help us spread this message to raise awareness and show your support! Visit our website (nrxn1network.org) for additional ways to get involved! #NRXN1AwarenessDay

✨ Today we celebrate #NRXN1AwarenessDay w/our friends at @Nrxn1Network! We have over 15 participants w/#NRXN1-related disorder or 2p16.3 deletion syndrome registered in #SimonsSearchlight. 🌐🧬 Find resources, data, support, family stories and more: bit.ly/NRXN1Report

Get ready for our first NRXN1 Deletion Syndrome Awareness Day on February 16!

#ShineYourSearchlight✨ Your medical history helps researchers understand NRXN1 Deletion Syndrome and develop better therapies. Are you a participant ready to complete this task? Go to bit.ly/Simons_Searchl…

#ShineYourSearchlight✨ Join Simons Searchlight, a trusted research partner funded by the Simons Foundation, and help us learn more about NRXN1 Deletion Syndrome! #SimonsSearchlight #GeneticsCommunity #RareDiseaseResearch #CareForRare