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


Issues With My Tissues


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, Lara Bloom decided to try and become the first person with EDS to walk the London Marathon.


The documentary follows Lara’s journey and features interviews with medical professionals, families with EDS and individuals who have suffered from misdiagnosis.


Coming Soon

Lara is currently working on her memoir.


Please subscribe to her social media channels and keep an eye on this website for the latest updates on this exciting project.

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My EDS Challenge

Cambodia to Vietnam Cycle Ride

Lara is going to attempt to cycle from Cambodia to Vietnam in February 2020.

Despite suffering with various problems with her EDS, she has been given medical clearance to begin training and plans to reach the finishing line for all of the Ehlers-Danlos community, just like she did at the London Marathon in 2011.

This challenge is in aid of raising awareness and funds for

The Ehlers-Danlos Society.


My EDS Challenge: Cambodia to Vietnam cycle in aid of The Ehlers-Danlos Society.