Emma was diagnosed with Vascular Ehlers Danlos Syndrome at the age of 20, after having lost five family members to the disease. In 2014, frustrated by the lack of information and research on VEDS, she and her husband, Justin, founded the DEFY Foundation to help raise awareness and funds to support further research. She has also been involved with the work of the VEDS Collaborative and the VEDS Movement.

Emma shared her story for Community Voices as part of the EDS ECHO Summit Series: Vascular EhlersDanlos Syndrome. This twoday event was focused on vascular EDS, and covered:

Genetic and molecular biology of vED
Interpreting genetic testing
Psychosocial issues in patients living with vEDS
Exercise with vEDS

Recordings can be viewed here: https://www.ehlersdanlos.com/edsech...