“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.
After two years of dedicated work by a team of experts from both the US and Europe, the new Care Guidelines for TS have been finalized. TSGA is proud to have been a primary sponsor of this project. 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 CARE GUIDELINES
After two years of dedicated work by a team of experts from both the US and Europe, the new Care Guidelines for TS have been finalized. TSGA is proud to have been a primary sponsor of this project.
These guidelines are directed by evidence-based research. We are now working with the
greater TS community to increase research to fill in gaps in our knowledge.
TS Care Guidelines Abridged Version For Patients and Families
Available in English and Spanish
This is a brief synopsis of the Professional Care Guidelines intended to improve care
by encouraging communication between individuals with Turner syndrome/parents/caregivers and their health-care providers during visits.
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
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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