Raising Awareness of Rare, Chronic & Invisible Diseases Worldwide

Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration

(Penn State College of Medicine)

Representing the Patient Voice &

Fostering Global Collaboration.

Empowering Patient Engagement

in Research & Development &

Promoting Patient Centred Outcomes.


I am Number 17 Campaign

A Tokeda led campaign highlighting how
1 in 17 people in the UK is impacted by rare diseases.
Lara was paired with photographer Ross Fergusson to help illustrate her personal story with rare disease.

EDS & ME Vlog - Latest Episode

"Nothing About Us Without Us"

With collaboration comes a real opportunity to make change happen.


President & CEO:

The Ehlers-Danlos Society

Patient Engagement & Advocacy Expert

for Rare, Chronic & Invisible Conditions

Public Speaker & Campaigner

  • Facebook
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  • YouTube
  • Instagram
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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