Highlights

May 17, 2020

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), c...

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Mar 6, 2020

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...

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Jan 30, 2018

'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, ...

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"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