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Turner Syndrome Society
of the United States (TSSUS)


2022 Annual Membership Meeting Presentation

Each year, the Society becomes a brighter beacon of hope, turning tears and fears into feelings of relief.  TSSUS is the largest organization supporting those with TS in the world and we coordinate efforts with national and international TS organizations, physicians, and researchers.


We understand every person’s needs are unique a Turner syndrome affects individuals differently. Education is our foremost goal whether you are a member of our society or a guest, you may access all resources and receive support from parents and individuals who have experience with TS. Membership benefits include special opportunities and discounts.

With an uncompromising effort, TSSUS continues to build upon our mission and achievements through dedicated leadership. Determining what is possible and what is necessary, then carefully balancing the two, allows for the TSSUS legacy to continue.

​TSSUS is proud of the following key accomplishments:

  • Creating and maintaining support groups across the United States.

  • Providing education and support through the TSSUS national annual conference, for people with TS and their families.

  • Coordinating research study support that led to the FDA approval of Human Growth Hormone (HGH) and estrogen therapy as standard care for TS.

  • Coordinating TS researchers and physicians to create the first “Recommendations for Diagnosis and Treatment of Individuals with Turner Syndrome”​.

  • Maintaining the Healthy Heart Screening and Study that saves lives while advancing TS heart research.

  • Coordinating and funding the 1st Turner Resource Network Professional Symposium​ in 2014 and co-facilitating the 2nd in 2016 and 3rd in 2018.

  • Collaborating with the Turner Resource Network to revise the TS Clinical Practice Guidelines and produce a patient version of the guidelines.

  • Developing the Turner Syndrome Research Registry to advance TS research. A collaboration with the TS health and research community.

  • Sustaining a culture of respect, support, and continuous desire to improve the lives of those with TS and those who love them.

The Butterfly Society is a fundraising initiative allowing committed donors to enable TSSUS to support the TS community. 


All nonprofit charities are required to make their financials available to the public, either online or by request. We value being transparent with our community and welcome any questions.

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