“Unlocking the world of possibilities.”
Whether you are an adult with TS or the parent of a daughter with TS, the information available here will empower you to understand TS and advocate to meet your needs.
Information and tools to assist professionals in providing quality care to all patients with TS.
TSGA is unlocking the world of possibilities. Keep up to date on what we are doing, what is going on the TS community around the world and how to get involved. Find out more…
Support the important work of Turner Syndrome Global Alliance (TSGA). TSGA is a 501c3 nonprofit organization and your donation is tax-exempt to the full extent of the law. Your donation will enable us to continue our important work as we connect science, resources, and funding to the TS community. Click here to make a donation.
TURNER SYNDROME RESOURCE KITS
TSGA is excited to announce the launch of the TSGA Resource Kit for newly diagnosed families. This Kit, made possible by grants from MMIC and Genentech, has been distributed to ten Turner Syndrome Clinics across the country. It includes a Bear to remind patients and families that they have joined a community of support, and it includes a flash drive with multiple resources to ensure access to good information about TS.
It is our hope that the information in this Resource Kit will help to inform and empower individuals and families as they navigate the health care system to advocate for their own or their loved one’s needs.
TSGA is seeking to partner with local communities to expand this project to other Clinics in the future. The Resource Kit is available for individual purchase on our website at http://tsgalliance.org/shopping/.
3rd ANNUAL KALEIDOSCOPE WALK
To register go to: http://www.firstgiving.com/TSGA/turner-syndrome-kaleidoscope-walk-2017
TURNER SYNDROME RESEARCH REGISTRY
The Turner Syndrome Research Registry is a database specifically dedicated to Turner syndrome research. It is the only registry that allows the information stored there to be shared with many research teams for years to come.
Click “Learn More” for complete information or to register.
GROWTH AWARENESS VIDEO
This video was created by Turner Syndrome Global Alliance for Growth Awareness. Growth is an indicator for health in children. Help us spread the word by sharing this video.
Proceedings From the Turner Resource Network Symposium: The Crossroads of Healthcare Research and Healthcare Delivery
Aortic Dimensions in Turner Syndrome – This recent research article comes out of Oregon Health and Sciences University, home of Dr. Michael Silberbach who is a cardiologist, researcher, and long time TS advocate. The information presented in this article will allow clinicians and other caregivers to calculate aortic Z-scores using a Turner-based reference population. Share this with your own cardiologist! June 2015 Read more…
We are based out of Overland Park, Kansas and are seeking to have a global impact through our work. Read more…
The Turner Syndrome Global Alliance (TSGA) aims to have a direct impact on the lives of girls, women, and families living with Turner syndrome (TS) by working to include TS in the national conversation on genetic research. TSGA will foster collaborative opportunities for data sharing, the development of evidence based standards of care, and translational research to improve the quality of life for girls and women with TS.
TSGA also supports the development of a network of clinics as an effective health care delivery system for comprehensive care for girls and women with TS and to increase the TS knowledge base of medical professionals across the country. Additionally, TSGA will provide information on the most current research, outcomes, and strategies to allow girls and women with TS to live life to their fullest potential.
TSGA – “Unlocking the world of possibilities”
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TSGA is committed to increasing research on Turner syndrome by working with individuals, families, medical providers, and researchers to create opportunities for evidence-based research to occur. Learn more…
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