Welcome to Turner Syndrome Global Alliance’s resources for Newly Diagnosed Individuals and Families.  TSGA was founded by parents of girls and young adults with Turner syndrome. We have stood in your shoes, and we know that a diagnosis and the months that follow can be frightening and overwhelming.  It is important to learn about Turner syndrome from reliable resources so that you may become your own best advocate or the best advocate for your loved one. We have compiled this list of resources to arm you with knowledge and empower you to understand Turner syndrome care and ask questions of your care team.

Please know that you are not alone.  You have entered a unique community of support that is as diverse and wonderful as our daughters, sisters, wives, and friends that live with Turner syndrome.   We hope you find another girls, women, or families to connect with in your local community, but if not, there is a large community of patients and advocates on Facebook.  When you are ready to reach out, you will find that the shared experience of living with Turner syndrome will provide support and connection that will empower you to be a stronger advocate for your loved one.

GENERAL INFORMATION

CHECKLISTS and TOOLS

 

 

 

 

 

 

Clinical Care Guidelines for Families – English and Spanish

Clinical Care Guidelines for Professionals

TS Healthcare Checklist for Adults

TS Pediatric Health Checklist

TS Growth Chart

CARDIAC INFORMATION

TS Heart Health Guide

TS Cardiac Screening & Monitoring

Aortic Dilatation & Dissection – AHA

Aortic Dimensions in TS

Ritter Rules – Aortic Dissection

NONVERBAL LEARNING DISABILITIES (NLD)

 

 

 

 

 

 

NLD Overview

Videos – NLD

Additional NLD Resources

GROWTH HORMONE – ESTROGEN

TS Ovarian Hormone Replacement

Patient Guide – Growth Hormone Treatment

Video – Growth Hormone

Growth Hormone Providers

TRANSITION RESOURCES

Got Transition

Transition Readiness Assessment

ADDITIONAL RESOURCES

About TSGA & Other TS Organizations

List of TS Clinics