Welcome! We’re glad you found us.
Getting a diagnosis of NRXN1 Deletion Syndrome can be overwhelming and isolating. You may feel confused and scared for the future. Please know that you are not alone.
NRXN1 Network is here to support you, your family, and your care team. We don’t have all the answers (yet!) but know that there are many families just like yours who are navigating this journey. We’re here to provide guidance and connect you with resources, support, and information.
Below are the steps we encourage families to take after they receive their diagnosis:
What Next?
Learn the basics.
1
NRXN1 deletions affect individuals in very different ways. Start here to learn more about the disorder and the most common symptoms. Find answers to the most commonly asked questions on our FAQ page. Then head over to this blog post that tries to make sense of what being “at risk” for autism and other disorders really means.
Join our network.
2
Stay connected by signing up for our contact registry. Make sure you receive the latest updates from our organization about upcoming events, new research studies, and scientific advances.
Connect with our global community.
3
Join our family support Facebook group with more than 500 members from all over the world. Also follow our public social media pages (Facebook, Instagram, X, YouTube).
Share your experience.
4
NRXN1 Network has partnered with Simons Searchlight to build a growing natural history database and biorepository that is available to researchers all over the world. Learn more and sign up here. Please visit our Research page to learn more about participating in additional NRXN1 studies. Scientific breakthroughs are only possible through collaboration between families and researchers.
Get involved.
5
There are many ways to support our mission, whether through fundraising, advocacy, or volunteering your time and expertise. Learn about the ways you can make difference by exploring the pages under the “Get Involved” tab in header above.