Baroness Nicola Blackwood releases video for EDS/HSD Awareness Month

Posted May 23, 2019

“Ehlers-Danlos syndrome is a rare genetic condition that is often misunderstood and can be difficult to diagnose. I remained undiagnosed for more than 30 years,” stated Baroness Nicola Blackwood in a recent video from the UK’s Department of Health and Social Care. “I was finally diagnosed thanks to a wonderful team at University College London and my life was completely transformed. But I know that I was one of the lucky ones. Not everyone is in the same position and will be diagnosed. That needs to change now.”

To mark Ehlers-Danlos syndrome and HSD Awareness Month, UK’s Minister of Health Innovation Nicola Blackwood shared her EDS journey as she discussed new strategies in improving patient care for individuals living with rare diseases. She also calls on people to take part in health research to speed up diagnosis and develop cutting-edge treatments.⠀

Baroness Nicola Blackwood #myEDSchallenge

To mark Ehlers-Danlos syndrome and HSD Awareness Month, Baroness Nicola Blackwood calls on people to take part in health research to speed up diagnosis and develop cutting-edge treatments. Please join the Global Registry and do your part for research! This is a vital tool that will help researchers uncover the unknown in the Ehlers-Danlos syndromes and hypermobility spectrum disorders.Visit ehlers-danlos.com/eds-global-registry/

Posted by The Ehlers-Danlos Society on Friday, May 10, 2019

 

Please join the Global Registry and do your part for research!⠀

This is a vital tool that will help researchers uncover the unknown in the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Categorized in: