February is Turner Syndrome Awareness Month: Spreading Rare Disease Awareness

The month of February is recognized as Turner Syndrome Awareness Month, a time to spread awareness about this rare disease among the medical field and the general public. The Turner Syndrome Foundation (TSF) has put together a suite of resources and activities that can help the Turner syndrome community and its allies (like you!) contribute to increased awareness during this time. Continue reading if you are interested in learning more.

About Turner Syndrome

Turner syndrome, which is also called 45,X0 or 45,X, is a rare genetic condition in which a woman is partially or completely missing one of the X chromosomes. This rare condition is generally not inherited in most cases, but instead occurs during the development of the affected embryo and appears randomly. The signs and symptoms of the syndrome can be varied and wide-ranging between patients; however, they may include short stature, swollen hands and feet in infancy, a short, webbed neck, low thyroid hormone, infertility, heart defects, diabetes, low-set ears, low rear hairline, vision and hearing problems, obesity, and learning difficulties. There is no cure for the syndrome and treatment is mostly symptomatic and supportive; approaches may include estrogen replacement therapy, growth hormone supplements, and surgery; reproductive technologies such as in-vitro fertilization can help circumvent infertility. To learn more about this rare disease, click here.

Get Involved

TSF has put together a very handy Turner Syndrome Awareness Month toolkit, which can be found here. This resource includes a variety of useful components, such as social media assets, awareness goals, a poster, important talking points, and even a sample press release. You can also show support by contributing to a fundraiser.

They also have a full calendar of events for the month as well. Click here to check it out and get signed up. TSF also recommends that you follow them on Facebook, Instagram, and TikTok. Learn more about TSF social media here.

The foundation also has special awareness activities for children, their annual Greeting Card auction, and merch shop. For more information about Turner Syndrome Awareness Month, click here.

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