News & Media

President and CEO Lara Bloom Appointed to Professorship at Penn State College of Medicine

Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD),...

EDS & Me VLOG - Special Episode: Cambodia & Vietnam Cycle Challenge

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

'Issues With My Tissues' Documentary

In 2011 at the age of 31, despite having barely walked more than three miles at a time before in her life due to Ehlers-Danlos syndrome,...

"Never underestimate the power of the patient voice.

Our narrative brings the purpose, the reason and the emotion. Without it, a project is not complete."

- Lara Bloom