The people behind TSGA.

Turner Syndrome Global Alliance (TSGA) was incorporated in May 2014 and granted its 501c3 nonprofit status in September 2014. We are further classified as a 509(a)(2) Public Charity and all donations made to TSGA are tax-deductible to the full extent of the law. We are based out of Overland Park, Kansas and seek to have a global impact through our work.

TSGA was founded by parents of  young women with Turner syndrome (TS).  We aim to have a direct impact on the lives of girls, women, and families living with TS by working to include TS in the national conversation on genetic research. We are the voice for a patient and parent perspective as we seek collaboration with scientists, researchers, and doctors to ensure that TS research and resources have meaningful outcomes.

Since 2014, TSGA has worked to develop a national network of Turner Syndrome Clinics to improve the quality of care for girls and women with TS.  This network of Clinics provides an opportunity to for clinicians to share resources and develop expertise.  Beginning in 2019, TSGA is working with key Clinics to implement an data collection project, through an existing system called REDCap, that will allow multiple institutions to collect and share data for research.   We anticipate that this project will lead to increased research and knowledge about TS that can be translated into updated care through the Clinics.