TSSUS is the largest organization – worldwide – supporting the Turner syndrome community.
The Turner Syndrome Society of the United States: Advancing knowledge, facilitating research, and supporting all those touched by Turner syndrome.
Warm Holiday Greetings from the Turner Syndrome Society
As we gather to celebrate this joyful season, we reflect on the many milestones we've achieved together this year. From supporting impactful research to sharing valuable knowledge, our community has grown stronger, united by a shared purpose. We are incredibly grateful for each of you this holiday season—including your families and friends who make this journey meaningful. Your support, resilience, and dedication inspire us to dream big and expand our programs to support more people and their needs.
May your holidays be filled with love, laughter, and peace, and may the New Year bring hope, happiness, and continued growth for our community. Here's to all we’ve accomplished together—and to the exciting possibilities of 2025! Cindy, Deborah, Becky and Bobby
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¡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.
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.
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.
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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