TURNER SYNDROME SOCIETY OF THE UNITED STATES

The Turner Syndrome Society of the United States (TSSUS or TSSUS) is a national 501(c)(3) nonprofit and the largest dedicated Turner syndrome community in the United States, providing education, patient- and family-focused resources, provider directories, research participation opportunities, scholarships, and community events. ([turnersyndrome.org](https://www.turnersyndrome.org/))

In the last 2–3 years the organization has published a 2025 Annual Report, hosted ongoing national and regional programs (including the annual national conference and Chasing Butterflies community walks), and released newly revised clinical care guidelines with patient-facing and Spanish-language versions; it also promotes a Cardiac Alert Card and maintains a TS research registry and provider directory to support clinical care and research. ([turnersyndrome.org](https://www.turnersyndrome.org/))

TSSUS’s most recent publicly filed Form 990 (tax year 2023) confirms active operations and financial scale (total revenue reported on the 2023 Form 990: $1,110,552; total net assets/end-of-year fund balance: $1,272,143), and the organization continues to register attendees and plan its national conference and other community programs. ([turnersyndrome.org](https://www.turnersyndrome.org/_files/ugd/ff2c76_29893da34e5b422b9a922afd787cd130.pdf?index=true))