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VLOG
Highlights
Not Just Patients Podcast - Advancing Equity, Diversity, and Inclusion in Healthcare
A strong patient advocate, Lara has a passion for pushing boundaries and fighting for progression DE&I in healthcare and LGBTQIA+ rights....
Dec 9, 2024
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10 Minutes With Rhiannon Walls: Parenting & rare diseases
Becoming a new parent is challenging at the best of times. But, what does this look like when you’re living with a rare disease? In this...
Oct 10, 2024
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From Photographer to Professor: With a few detours along the way
Lara is interviewed by Emma Sutcliffe about her story and journey. Click here to listen to episode.
Oct 10, 2024
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RARE Pride: A Queer Conversation with Lara Bloom
On June 11, 2024, Global Genes hosted a forum for stakeholders in the rare disease community to discuss their intersectionality as part...
Oct 10, 2024
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Bendy Bodies Podcast: Examining The Future of EDS Diagnosis and Care
In this episode, Dr. Linda Bluestein, the Hypermobility MD, hosts a captivating conversation with Lara Bloom, President and CEO of the...
Oct 10, 2024
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CEO & Professor Lara Bloom on her relentless pursuit for change on a global scale
From stripes to strength: How the Ehlers-Danlos Society transforms lives through advocacy, research and community support. Click here to...
Oct 10, 2024
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Supporting Individuals and Their Families with Rare Conditions: Strategies for Healthcare Professionals
Dealing with a rare condition can be a daunting experience for individuals and their families. Rare diseases, by their very nature, often...
Oct 10, 2024
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Symptomatic
The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders offers a novel approach to the subject,...
Oct 10, 2024
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EDS & Me VLOG Episode Forty Four: Behind the Scenes of our Global Learning Conference!
Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...
Aug 27, 2024
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EDS & Me VLOG Episode Forty Three: European Conference Season
Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...
Aug 6, 2024
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Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders
The Ehlers-Danlos Society Extension for Community Health Care Outcomes (EDS ECHO) is a portfolio of teleconferencing programs developed...
Jun 11, 2024
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An assessment of the current medical management of thoracic aortic disease: A patient-centered scoping literature review
Thoracic aortic aneurysm and dissection are complex diagnoses that require management by multidisciplinary providers using a variety of...
Jun 11, 2024
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Implementation of telemedicine in the care of patients with aortic dissection
Telemedicine uses telephone-based or any form of digital communication for remote clinical services. It has been a field of interest for...
Jun 11, 2024
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Aortic dissection in pregnancy and the postpartum period
Pregnancy-associated aortic dissection (AD) is a rare event, with an incidence of 0.0004% per pregnancy. The work of the Aortic...
Jun 11, 2024
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Lived experiences of people with or at risk for aortic dissection: A qualitative assessment
Aortic dissection (AD) is a life-changing event that is often accompanied by a loss of normal quality of life. Survivors of AD go on to...
Jun 11, 2024
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The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community
Understanding what matters most to patients can help guide research in a direction that is best situated to provide evidence that is...
Jun 11, 2024
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Consensus recommendations on how to assess the quality of surgical interventions
Postoperative complications represent a major public health burden worldwide. Without standardized, clinically relevant and universally...
Jun 11, 2024
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The mental health impact of aortic dissection
Although the topics of surgical techniques and medical therapies have been widely studied in aortic dissection (AD), studies examining...
Jun 11, 2024
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Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study
Background: A condition is defined as rare if it affects fewer than 1 in 2000 people in the general population. Limited evidence suggests...
Jun 11, 2024
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Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals
Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health,...
Jun 11, 2024
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Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study
Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their...
Jun 11, 2024
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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...
Jun 11, 2024
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AccessiBe's Spotlight Session with Lara Bloom
Lara is interviewed by Josh Basile as part of accessiBe's spotlight sessions - this is a series dedicated to conversations with...
Jun 6, 2024
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EDS & Me VLOG Episode Forty Two: Springtime in New York
Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...
May 23, 2024
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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...
Apr 23, 2024
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EDS & Me VLOG Episode Forty One: Lots of fun in quarter one!
Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...
Mar 25, 2024
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Rare Disease Month - The Lisa Burke Show
In the lead-up to Rare Disease Day on 29th February, Lara talks about the mental health impact on the whole family and care-giving unit....
Feb 21, 2024
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EDS & Me VLOG Episode Forty: Wrapping up the year
Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...
Jan 18, 2024
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#RareShowcase23 Lightning Talk Lara Bloom - How project ECHO can help rare diseases
At the London Rare Disease Showcase, Lara shared the work of The Ehlers-Danlos Society using project ECHO to help rare disease, with a...
Dec 12, 2023
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EDS & Me VLOG Episode Thirty-Nine: Madonna, Pumpkins and Everything in Between
Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...
Nov 23, 2023
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EDS & Me VLOG Episode Thirty Eight: Summer
Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...
Sep 20, 2023
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EDS & Me VLOG Episode Thirty Seven: Hopping around Europe
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Jul 3, 2023
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Handi-Link Radio Interview
This program focuses on disability issues. Host Cam Wells explores all sides of this comparing and contrasting with able bodied life....
Jun 23, 2023
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EDS & Me VLOG Episode Thirty Six: Springtime in New York
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
May 31, 2023
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EDS & Me VLOG Episode Thirty Five: Adapting to life as a Mama
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Apr 18, 2023
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Two Disabled Dudes Podcast - You Got This
You Got This, Mental Health featuring Lara Bloom – There are many challenges living with a disability. On top of the physical...
Apr 14, 2023
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EDS & Me VLOG Episode Thirty Four: Welcome To The World Lola!
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Mar 14, 2023
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3 Women with EDS who are shaping the future
Lara speaks with Reader's Digest's Amy Fogarty alongside Jeannie Di Bon and Courtney Gensemer about their lives with EDS and how they are...
Feb 24, 2023
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Chromodiversity Podcast: Dazzling Zebras
Lara joins Chromodiversity's Elliot Polack to discuss how improved classifications and better awareness of EDS and HSD is resulting in...
Feb 14, 2023
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VR Workforce Studio Podcast
The Resolve To Work In The Face Of Chronic Illness: Honoring Rare Disease Awareness Day Lara joins hosts Rick Sizemore and Betsy...
Feb 2, 2023
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EDS & Me VLOG Episode Thirty Three: Jingle All The Way
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Jan 6, 2023
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CNN Health
Lara speaks to CNN's Sarah Lazarus, whose daughter was diagnosed with hEDS in an effort to raise awareness about EDS, discussing how many...
Jan 4, 2023
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EDS & Me VLOG - Episode Thirty Two: Seasons Changing
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Dec 7, 2022
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EDS & Me VLOG - Episode Thirty One: A Very Busy Summer
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Oct 27, 2022
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EDS & Me VLOG - Episode Thirty: The Circle of Life...
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Aug 19, 2022
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EDS & Me VLOG - Episode Twenty Nine: On the road again...
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Jun 17, 2022
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The Fem Word - EDS: It's Time To Make The Invisible Visible
Lara speaks with Emily Montague, Managing Editor of The Fem Word, about the way EDS patients and others with chronic illnesses are...
Jun 9, 2022
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EDS & Me VLOG - Episode Twenty Eight: Highs and Lows
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Apr 19, 2022
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EDS & Me VLOG - Episode Twenty Seven: First VLOG of 2022
Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...
Mar 11, 2022
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The Health Design Podcast
The Health Design Podcast brought to you by the Journal of Health Design speaks to Lara Bloom about her experience living with an...
Feb 9, 2022
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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
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