The Turner Syndrome Society of the United States: Advancing knowledge, facilitating research, and supporting all those touched by Turner syndrome.
TSSUS is the largest organization – worldwide – supporting the Turner syndrome community.
Hi, Butterflies! Welcome to the Butterfly Book Nook, a collection of educational and entertaining books by women with TS. The internet is so very alluring, but sometimes it’s great to curl up with a good book. Visit the Nook and be inspired by the TS experiences of others.
Cindy Scurlock
President & CEO,
M.A., L.P.C.
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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 in March 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 UT Health surveys inspires & facilitates patient-powered TS research.
"An unforgettable experience that truly helped me to have a feeling of a sense of belonging would be when I was able to attend my first Annual TSSUS conference last year!" Adriana Garcia
Thank you, Adriana, for your thoughtful response in our discussion about the potential for those living with Turner syndrome.
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Contact Us for Questions: If you have any specific questions, feel free to contact us—we're here to help!
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Connect with the Community: Gain insights from others by contacting us to connect with a peer via phone, email, or by joining the TSSUS private Facebook group.
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Browse Resources: Explore our wide range of educational materials, articles, and support resources tailored for Turner Syndrome.
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Stay Informed: Check for updates on new events, webinars, and research related to Turner Syndrome.