Delayed diagnosis remains a major issue within the Turner syndrome community, with many individuals not diagnosed until adolescence or adulthood despite having signs and symptoms throughout childhood. This delay can have serious health consequences, particularly when important screenings and specialized care are missed. Alysa’s experience highlights why earlier diagnosis and increased awareness matter—not only for
My Story: Alyssa Jefferson Read More
In this article, we will share experiences of seven mothers who received their daughter’s Turner syndrome (TS) diagnosis during pregnancy. Their stories reflect a wide range of experiences from navigating the shock and uncertainty of the diagnosis, to finding knowledgeable medical care, to supporting and advocating for their daughters after birth. Turner syndrome can be
Prenatal Diagnosis of Turner Syndrome: Stories & Advice from Experienced Mothers Read More
My name is McKenna Fleming. I am 22 years old, and I was diagnosed with Turner syndrome in 2019. I am currently in a Doctorate program to become an occupational therapist. I have been so fortunate to partner with the Turner Syndrome Foundation to conduct my capstone project research study on the lived experiences of
Researching Social Skills and Turner Syndrome: Findings from a Virtual Training Study Read More
The Turner Syndrome Foundation is proud to announce its involvement in the Network for Advancing Sex Chromosome Aneuploidy Research Readiness (NASCARR), a newly funded initiative through the Rare Diseases Clinical Research Network (RDCRN). This partnership represents an important step forward in advancing research, collaboration, and long-term progress for individuals with Turner syndrome and the broader
TSF Joins Network for Advancing Sex Chromosome Aneuploidy Research Readiness Read More
The information presented in this blog comes from the webinar, Hearing Loss Rehabilitation & Counseling. Rehabilitation counselors play a vital role in supporting Deaf and hard-of-hearing individuals as they navigate personal, educational, social, and professional challenges. These professionals may support individuals through counseling, supporting them in accessing resources, and more. In this blog, you will
The Role of Rehabilitation Counselors for the Deaf & Hard-Of-Hearing Read More
Individuals with Turner Syndrome face higher risk of developing insulin resistance, glucose intolerance, and Diabetes Mellitus Type 1 and 2. The advancement of technology in medicine can improve management of metabolic disease and enhance long-term health outcomes. This article dives into the various technologies and medications available for individuals with Diabetes Mellitus. Information presented in
Updated Technologies for the Treatment of Diabetes Read More
In honor of Turner Syndrome Awareness Month 2026, the Turner Syndrome Foundation hosted a Patient and Parent Panel event to raise awareness and build community. This event brought together three panelists: two women living with Turner syndrome and one mom to a daughter with Turner syndrome, in addition to the facilitator, a woman with Turner
“You Have to Be Loud”: Voices from the Turner Syndrome Community Read More
“Is Turner syndrome inherited?” is one of the most common questions about this genetic disorder. At first glance, it might seem like something that runs in families, especially since it often comes up in genetics classes and discussions. After all, when a condition involves chromosomes, it is natural to wonder whether it can be passed
Is Turner Syndrome Inherited? Read More
Living with Turner syndrome (TS) often means navigating healthcare, education, relationships, and life transitions with unique considerations. Building a strong Turner syndrome support system can make a meaningful difference in emotional well-being, confidence, and long-term health. While many women with TS become strong self-advocates, knowing what kind of support to ask for is not always
The Kinds of Support All TS Women Need Read More
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