Registration for the 2026 TSSUS National Turner Syndrome Conference opens Mon, Feb 2, 2026.
We can't wait to see you all in Cary (Raleigh),
North Carolina, July 24-25, 2026!
There is something powerful that happens when people with Turner syndrome come together. A single friend who “gets it” can change everything. A local support group or online Zoom call can transform isolation into belonging. A national conference can spark lifelong connections. At TSSUS, we’ve seen it again and again – hope is found when people are seen, understood, and celebrated.
That is what community at the Next Level looks like.
Cindy Scurlock
President & CEO,
M.A., L.P.C.
This card could save your life. If you don't have one, please order today. It's free.
You can order one (1) per household free during TS Awareness Month with a $1 fee to cover shipping. This is the perfect size for your wallet (the same as a credit card) and is made out of rigid plastic for durability. It's a must-have for people with Turner syndrome of all ages.
How to use this card: Keep this card in your wallet by your drivers license or official state ID. The idea is that first responders or medical professionals can easily find it in case of an emergency where someone might be unresponsive or too scared or confused to communicate effectively.
You can also use it to show to medical staff in the Emergency Department at triage. The QR code can be scanned with the camera on any smart phone or device to go to the Cardiac Emergency landing page on the TSSUS website where there is more detailed information, including how to exclude or rule out aortic dissection by specific testing.
Extend the Telehealth Options for Patients
TSSUS is urging Congressional leadership to ensure Americans can continue to receive the same telehealth that they were able to use in 2024. We want Congress to take action by September 30, 2025 to establish permanent or long-term access to telehealth.
¡Nuevas Guías de Práctica Clínica en Español!
¡Nos complace compartir las Pautas de atención clínica recientemente revisadas para el síndrome de Turner! Esta versión está diseñada para pacientes, familias y cuidadores. También puede acceder a la versión completa para proveedores de atención médica. Explora ambas versiones aquí.
New Clinical Practice Guidelines!
We're excited to share the newly-revised Clinical Care Guidelines for Turner Syndrome! This version is designed for patients, families, and caregivers. You can also access the full version for healthcare providers. Explore both versions here.
California Expands Prenatal Screening Program
The service is offered to all pregnant women in California to detect potential genetic conditions and birth defects in their developing fetus. California is the only state providing voluntary, standard-of-care prenatal screening to all individuals.
Read more.
TSSUS is committed to providing information to those who receive prenatal test results indicating Turner syndrome. Unfortunately, information is limited because there is little research related to outcomes and testing accuracy. We are launching a new TS survey in May to obtain information about TS during pregnancy-early life. The survey announcement will be shared in the newsletter.
Data from TSSUS and UTHealth surveys inspire & facilitate patient-powered TS research.
"My health, my needs, and my understanding of who I am will keep evolving - and that’s okay. For those of us with Turner syndrome, this evolution is part of the story. It’s not a sign of weakness but rather, of resilience - proof that we are continually learning how to care for ourselves in deeper, wiser ways."
Thank you, Bethany, for your thoughtful response in our discussion about the potential for those living with Turner syndrome.
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