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.
As we say goodbye to 2024, we can all be proud of the real good that we accomplished – together. We've advanced Turner syndrome knowledge, supported impactful research, renewed hope for so many, and continued to connect as a community in meaningful ways. Thank you for all you did.
Looking forward to 2025, we anticipate providing even more awareness, resources, connections, and hope in service to those touched by Turner syndrome. New initiatives for 2025 include a reimagined and expanded event calendar, creating our best conference ever for Portland, Oregon, focusing on mental health, and overcoming every TS challenge. Thank you for joining us as we soar into a brilliant new year.
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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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