President & CEO:

The Ehlers-Danlos Society

Patient Engagement & Advocacy Expert

for Rare, Chronic & Invisible Conditions

Public Speaker & Campaigner

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Follow my journey advocating and representing the patient voice in rare and invisible diseases worldwide, as well as gaining an insight into my personal experience as a patient.

© 2019 Lara Bloom


Raising Awareness of Rare, Chronic & Invisible Diseases Worldwide

Rare, Chronic & Invisible Conditions - specialising in Ehlers-Danlos Syndromes &

Associated Symptoms & Conditions.

Representing the Patient Voice &

Fostering Global Collaboration.

Empowering Patient Engagement

in Research & Development &

Promoting Patient Centred Outcomes.


Join Me

Cambodia & Vietnam Cycle Challenge
in aid of Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorders.

EDS & ME Vlog - Latest Episode

"Nothing About Us Without Us"

With collaboration comes a real opportunity to make change happen.