Turner Syndrome Society of the United States (TSSUS)


501 (c)(3) EIN 41-1596910


Mission Statement

To advance knowledge, facilitate research and support all those touched by Turner syndrome. 


Vision Statement

An empowered and engaged Turner syndrome community. 

The Turner Syndrome Society of the United States (TSSUS) is a national non-profit organization serving the important and diverse needs of the Turner syndrome community. The  Society was created in 1987 by a group of women in Minnesota for the purpose of networking and support. Today we have over 600 members and 100+ volunteers supporting our valuable programs. 

We understand every person’s needs are unique and Turner syndrome affects individuals differently. Education is our foremost goal whether you are a member of our society or a guest, you can access the latest Turner Syndrome Clinical Guidelines, attend our National Conference, get support from parents and individuals who have experience with TS, attend local group events, plus access other resources.

Membership benefits include special opportunities and discounts


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



Goal Statement: To provide the most useful and accessible information to individuals and families for Turner syndrome related needs. 


Objective 1. Cultivate the TSSUS website to ensure it is the most useful online TS resource

Objective 2.  Successfully communicate information 

Objective 3.  Personally help people navigate their TS journey

Objective 4. Create and expand valuable resources. 

Objective 5.  Ensure TSSUS has strategic relationships with TS stakeholders and influence laws, policies, research, and education affecting the TS community



Goal Statement: Foster relationships and opportunities to support a culture of encouragement and benefit for one another.   


Objective 1. Provide opportunities for people to build relationships with one another in person

Objective 2.  Provide opportunities for people to socially connect with one another online

Objective 3. Promote respect, acceptance, and caring within TSSUS. 



Goal Statement: Maximize Turner syndrome research efforts to generate proven treatments.  


Objective 1.  Support the Turner Syndrome Research Registry (TSRR) to provide the highest quality source of TS data available to researchers

Objective 2.  Ensure TSRR support services are helpful to TS researcher


2020 Annual Meeting Video