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.
COVID-19 Update Read more.
Nationwide Shortage of Growth Hormone Norditropin Continues
UPDATE ... NPR: Early on, Novo Nordisk said the supply would be restored by February. Then, the estimate stretched to June. Now, the shortage is expected to last the rest of the year. Sponsor Message "Unfortunately, unforeseen circumstances have resulted in longer than expected ramp-up time to expand capacity at our new production facility and meet the ever-increasing global demand for Norditropin,"
Novo Nordisk spokesperson Allison Schneider told NPR in an email. "These manufacturing delays mean that in the US there will continue to be intermittent product availability with periods of stockouts of all Norditropin dose strengths until the end of 2023." She said the company is increasing manufacturing capacity and expects the supply to "stabilize" in 2024.
"We understand how frustrating this situation is for the communities we serve and are doing everything we can to minimize the impact for everyone affected."
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"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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