News & Updates
Announcements from the ITSN1 Patient Advocacy Group
August 4, 2026
ITSN1 Patient Advocacy Group Partners with Simons Searchlight
The ITSN1 Patient Advocacy Group has partnered with Simons Searchlight to help advance research on ITSN1-related syndrome. Simons Searchlight is an international online research program studying more than 185 rare genetic neurodevelopmental conditions.
By joining the program and sharing your experiences through online surveys and optional blood sample collection, families contribute to research that helps scientists better understand these conditions and supports the development of improved care and future treatments. Every family's participation makes a difference.
To register, visit the Simons Searchlight website and click “Join Us,” or use the direct registration link below. You can also learn more about ITSN1 on their research page and gene guide.