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...
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VLOG
Education & Awareness Videos
Oct 10
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
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
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
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
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
Symptomatic
The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders offers a novel approach to the subject,...
Aug 27
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 6
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...
Jun 11
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
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
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
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
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
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
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
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
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
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
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
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 6
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...
May 23
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...
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...
Mar 25
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...
Feb 21
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....
Jan 18
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...
Dec 12, 2023
#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...
Nov 23, 2023
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...
Sep 20, 2023
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...
Jul 3, 2023
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...
Jun 23, 2023
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....
May 31, 2023
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...
Apr 18, 2023
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 14, 2023
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...
Mar 14, 2023
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...
Feb 24, 2023
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 14, 2023
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 2, 2023
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...
Jan 6, 2023
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 4, 2023
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...
Dec 7, 2022
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...
Oct 27, 2022
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...
Aug 19, 2022
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...
Jun 17, 2022
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 9, 2022
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...
Apr 19, 2022
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...
Mar 11, 2022
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...
Feb 9, 2022
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 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...
"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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