Lived experience is the why and the how that health systems need
Lara shares in this article these & other forward-looking reflections on the future of patient advocacy, professionalisation, and the...
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VLOG
Press
Apr 23
RARE REV-inar Women in Rare science and research
To mark International Women’s Day 2024, Lara is interviewed on a special episode of the RARE Rev-inars, celebrating women in rare disease...
Feb 1, 2022
Lara Bloom joins the Stakeholder Network for Rare Diseases
Following on from Lara's contributions as a member of the Rare 2030 Panel of Experts, she has now accepted an invitation to join the...
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),...
May 25, 2019
The Ehlers-Danlos Society Awarded $50,000 Donation From Carnival Cruise Line
(MENAFN - Newswire.com LLC) BALTIMORE, May 24, 2019(Newswire.com) The Ehlers-Danlos Society is honored to have been in attendance at the...
Jun 12, 2018
Charity’s international director welcomes launch of EDS support group
Lara Bloom has walked the London Marathon, carried the torch for the London 2012 Paralympic Games, and is constantly on the move around...
May 1, 2018
Perfectly Imperfect Inspiring Woman Q&A
Trendable Woman of the Month. Meet Lara Bloom: Lara Bloom is the international Executive Director of the Ehlers-Danlos Society where...
May 2, 2017
Sky News Interview May 2017
Lara Bloom and Jodieanne Winter were interviewed live on Sky News during EDS awareness month to share the tragic story of Jodiesanne's 13...
Nov 11, 2016
Ehlers-Danlos Syndrome: More Than Just Stretchy Skin and Bendy Joints
U.S. News - Anna Medaris Miller One of the few sure things about the condition is that patients and professionals want answers. When...
Oct 13, 2016
Lara's mission against pain
The Jewish Chronicle - Jessica Weinstein Lara Bloom talks about living with Ehlers-Danlos Syndrome, a multi-systemic connective tissue...
Oct 13, 2016
Lara: living with Ehlers-Danlos Syndrome
Bowel & Cancer Research At the age of 24 Lara Bloom was diagnosed with Ehlers-Danlos Syndrome. For years before this, she suffered...
May 27, 2012
Bushey resident Lara Bloom sees torch she will carry for London 2012 Games Paralympic Torch Relay
Watford Observer - Amie Mulderrig A woman from Bushey has been given a glimpse of the torch she will carry this summer for the London...
Apr 13, 2011
Woman from Bushey with Ehlers-Danlos Syndrome to take on London Marathon
Watford Observer - Chris Hewett A woman suffering from a connective tissue condition which affects nearly every part of her body will...
"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
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