It’s always so great to see everyone connect and make friends at the TSSUS Conference. Did you know that you can also find friendships by participating in our local and virtual events? Our monthly generational Zoom chats are a great place to meet others with TS near your age and to build a support system of other women who understand what you might be going through. Be sure to check out our Event Calendar often so you don’t miss anything. TSSUS is a place for community, and we can help you build yours! Let us know how we can help; we’re always just a phone call away! Becky Brown
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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.
The Good Doctor episode featuring a baby with Turner syndrome (Season 6, Episode 19 which first aired on ABC) is now available only on Hulu. More details here.
New Clinical Practice Guidelines!
We are happy to share the newly-revised Clinical Care in Turner Syndrome Guidelines with you! This is a patient/lay version of the Clinical Practice Guidelines for Girls and Women With Turner Syndrome, their parents, caregivers and families. Both the patient/lay person version and the
full-length version for healthcare providers can be found here.
"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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