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FAQ

Answers to the questions we hear most.

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Turner syndrome (TS) is a chromosomal condition that affects females, occurring when one of the two X chromosomes is missing or partially missing. It affects approximately 1 in 2,000 live female births. TS can cause a range of health and developmental differences, including short stature, ovarian insufficiency, heart defects, and learning differences — but with the right care, people with TS lead full, healthy lives.
Turner syndrome is typically diagnosed through a chromosomal analysis called a karyotype, which can be done prenatally (via amniocentesis or chorionic villus sampling) or after birth. Some girls are diagnosed in infancy due to heart defects or lymphedema; others are diagnosed in childhood due to short stature, or in adolescence due to delayed puberty. Early diagnosis is important for timely access to growth hormone therapy and other interventions.
A TSGA-designated TS clinic provides multidisciplinary care coordinated by specialists who have expertise in Turner syndrome. This typically includes endocrinology, cardiology, reproductive medicine, psychology, and genetics — all in one coordinated care team. Designated clinics meet TSGA’s standards for TS-specific expertise and comprehensive care.

Use our Find a TS Clinic tool to search for TSGA-designated clinics by state. We currently list 80+ clinics across 22 states and Washington D.C. If there is no clinic in your state, our team can help connect you with telehealth options or the nearest available specialist.

InsighTS is TSGA’s patient-powered research registry — a secure, longitudinal database where individuals with Turner syndrome can share their health information to advance TS research. Participants complete periodic surveys about their health, treatments, and quality of life. The registry currently includes 1,200+ participants and has contributed to 40+ publications. Enrollment is free and open to all ages.

Anyone with a confirmed or suspected diagnosis of Turner syndrome can enroll, regardless of age. Participants under 18 can enroll with parental consent. There is no cost to participate, and you can withdraw at any time. Visit our InsighTS Registry page to learn more and enroll.

There are many ways to get involved: enroll in the InsighTS Registry, join our mailing list for updates, follow and engage with our Facebook community, make a donation to fund TS research, or reach out about volunteer and advocacy opportunities. Visit our Contact page to connect with our team.

TSGA is a 501(c)(3) nonprofit organization and all donations are tax-deductible. You can make a one-time or recurring gift via our Donate page, which links securely to PayPal. 100% of donations go directly to TS research and programs. You can also support us through planned giving, employer matching, or by fundraising on our behalf.

The Turner Syndrome Global Alliance’s mission is to connect science, resources, and funding to the Turner syndrome community — improving care, accelerating research, and empowering patients and families worldwide. We were founded in 2011 and are a 501(c)(3) nonprofit organization.

Yes. The Turner Syndrome Global Alliance is a registered 501(c)(3) nonprofit organization. All donations are tax-deductible to the full extent permitted by law. Our Tax ID (EIN) is available on our Contact page and upon request.

TSGA co-sponsored the 2017 International Turner Syndrome Consensus Guidelines — the most comprehensive, evidence-based clinical guidelines for the diagnosis and management of Turner syndrome. These guidelines cover all aspects of care from infancy through adulthood and are used by clinicians worldwide. A family-friendly version is available in our Resources section.

You can reach us through our Contact page, by email at info@tsgalliance.org, or by following us on Facebook. We typically respond to inquiries within 2–3 business days.

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Our team is here to help. Whether you have a question about Turner syndrome, need help finding a clinic, or want to learn more about our research programs — reach out and we’ll get back to you.

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