Turner Syndrome Global Alliance

Turner Syndrome Global Alliance TSGA's mission is to connect science, resources, and funding to the Turner Syndrome Community. Learn more at www.TSGAlliance.org

TSGA Mission Statement: Connecting science, resources, and funding to the Turner Syndrome community. Connecting Science: TSGA seeks opportunities to include Turner syndrome in existing and new research studies and strives to generate interest in TS in the research community. Connecting Resources: TSGA will collaborate with other organizations, groups, and individuals who provide accurate and im

portant resources to adults, girls, and families living with TS. We will also support the development of TS Clinics through parent advocacy and shared experience. Connecting Funding: By establishing relationships with scientific organizations, local hospitals, universities, and other stakeholders in research, TSGA will seek opportunities to connect funding to research related to Turner syndrome. The groundwork for TSGA has been laid. We are an official 501(c)3 non-profit registered with the IRS as of September 2014. We have recruited a Board of Directors, and we have created a strategic plan. Connections have already been made with a number of medical professionals, and we are working to generate excitement in the research world about TS.

06/18/2025

New Study Opportunity: PRIORITY-POI 🎉

Are you a teen/young adult (14–25 years old) with Turner syndrome or Trisomy X? Are you also living with primary ovarian insufficiency?

We want to hear your voice!
Join a one-time focus group (up to 90 minutes) about experiences with hormone replacement therapy.
💵 Participants receive $50 for completing the session!

✅ Ages 14–25
✅ Diagnosis of primary ovarian insufficiency
✅ Able to take hormone therapy (even if you're not currently)

Help shape future care! Learn more and sign up today. 🌟

TSGA is proud of its role as a funder and steering committee member of the InsighTS Registry.
03/11/2025

TSGA is proud of its role as a funder and steering committee member of the InsighTS Registry.

We are excited to announce that over 660 people have now enrolled in the INSIGHTS Registry! The INSIGHTS Registry collects and stores information about girls and women with Turner Syndrome. This includes genetic tests, imaging, medications, and more for hundreds of patients seen in clinics across the United States. Our overall goal is to be able to improve health outcomes in individuals with Turner Syndrome and to improve the care that they receive. A huge thank you to all of the participants who have already joined INSIGHTS! If you or your child has Turner Syndrome but are not yet enrolled, please consider signing up today!

Dr. Tartaglia has helped make the TS Clinic in Colorado a leader in excellent care and TS research.
03/04/2025

Dr. Tartaglia has helped make the TS Clinic in Colorado a leader in excellent care and TS research.

Dr. Tartaglia hard at work. While patients and families visit with Dr. T during the appointments, there is so much more to behind-the-scenes throughout her days than most realize. Juggling documentation, patient care, clinical trials, teaching, grant writing, publications and team leadership requires a remarkable work ethic and passion for what she does. Her contributions to X&Y Variations go far beyond time with patients during appointments, and her impact on both her team and improving care for X&Y variations is invaluable.

The INSIGHTS Registry collects medical history for patients with Turner syndrome. This includes genetic tests, imaging, ...
02/21/2025

The INSIGHTS Registry collects medical history for patients with Turner syndrome. This includes genetic tests, imaging, medications, and more for hundreds of patients. This research study will help us learn more about the current state of health for individuals with TS. INSIGHTS is also a way to conduct future studies that are meaningful to patients and their families!

INSIGHTS is available to anyone with TS! If you think you or your minor child may qualify, sign up to take part in INSIGHTS click here: https://redcap.ucdenver.edu/surveys/?s=HNHACE39TJC743FA

Learn more here; https://tsgalliance.org/research/the-insights-registry-for-research-enroll-now/

02/21/2025

We are now accepting applications for the eXtraordinarY Kids Internship Program! The Internship Program is designed to support the career growth of students and trainees interested in pediatric clinical research in X&Y Variations. These interns often play a crucial role on our teams, with many of them contributing to research publications and presentations. If you know of a hard-working student interested in X&Y Variations, please encourage them to apply! Applicants should be enrolled in or recently graduated from undergraduate, graduate, or medical school (though exceptional high school juniors and seniors will be considered on an individual basis). Applicants must be available full time for a minimum of 8 weeks during the summer months (May – Sept). The deadline to apply is March 13. A $3,800 stipend will be provided for each accepted intern.

If you would like to make a meaningful impact on the internship program, please consider donating today through our website! Our internship program is only made possible through the generous donations from our community. Donate today to help support the next generation of specialists!

Hello Friends, thank you for participating in TSGA's campaign over the years during TS Awareness Month. This year, al...
02/01/2025

Hello Friends, thank you for participating in TSGA's campaign over the years during TS Awareness Month. This year, all of TSGA's resources are being used to support the InsighTS Registry to increase research on TS. Learn more here: https://tsgalliance.org/research/the-insights-registry-for-research-enroll-now/

Our friends at the Turner Syndrome Society of the US are running a photo card awareness campaign, please reach out to them.

If you'd like a TS Awareness Month photo card, just submit your photo through Messenger here: https://m.me/30264154034

01/15/2025

Interested in learning more about BITSS? Mark your calendars for Sunday, January 26th at 7:30pm EST!! The Boston International Turner Syndrome Summit Board will be hosting a virtual informational session about our program for Summer 2025. Come get your questions answered and hear from our fabulous camp nurse, medical director, past participants and parents. Use the link below to register and receive the zoom link for the meeting. We hope to see you there!

https://www.cognitoforms.com/BostonInternationalTurnerSyndromeSummit/_2025InformationSessionRegistration

Happy New Year from TSGA!To the more than 600 individuals who have consented into the InsighTS Registry, thank you! You...
01/06/2025

Happy New Year from TSGA!

To the more than 600 individuals who have consented into the InsighTS Registry, thank you! Your data is being used for research to give us new information about Turner syndrome. Read an update on the InsighTS Registry here: https://secure.smore.com/n/9j2ab

If you want to participate, but have not signed up for the InsighTS Registry, learn more and join here: https://redcap.link/INSIGHTS-Consent

TSGA is grateful to the amazing team of doctors and researchers who are working with the TS community on this important project.

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Overland Park, KS

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