Education & Awareness Videos

Viewpoint: Revisiting the Declaration of Helsinki—A Patient-Centered Perspective, Lara Bloom

The Declaration of Helsinki has long stood as a foundational text in medical research ethics, shaping the ethical principles that govern...

Jun 6

Expert Perspectives on the Use of Generative AI in Medical Publications

How is generative artificial intelligence (GenAI) used in medical publications now? What is the potential? Lara was among a...

Jun 6

Move Daily

S3E5: Lara Bloom on hEDS and HSD Listen to Lara on how she raises global awareness of rare, chronic and invisible diseases, specialising...

Jun 6

Chezuba Talks: Impact Stories

Ep-215:Spotting the Zebra: Understanding Ehlers-Danlos Syndromes with Lara Bloom No two zebras have identical stripes, and a group of...

Jun 6

The Start: An Early Retirement

Lara is interviewed by Canadian podcast, The Start, who are based in Winnipeg. The show picked up the story of Jets prospect Chaz Lucius...

Jun 6

Patients facing Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)

For individuals living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), the journey to diagnosis and...

May 7

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

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

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

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

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

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

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

Symptomatic

The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders offers a novel approach to the subject,...

Oct 10, 2024

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"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

Education & Awareness Videos

Viewpoint: Revisiting the Declaration of Helsinki—A Patient-Centered Perspective, Lara Bloom

Expert Perspectives on the Use of Generative AI in Medical Publications

Move Daily

Chezuba Talks: Impact Stories

The Start: An Early Retirement

Patients facing Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)

Not Just Patients Podcast - Advancing Equity, Diversity, and Inclusion in Healthcare

10 Minutes With Rhiannon Walls: Parenting & rare diseases

From Photographer to Professor: With a few detours along the way

RARE Pride: A Queer Conversation with Lara Bloom

Bendy Bodies Podcast: Examining The Future of EDS Diagnosis and Care

CEO & Professor Lara Bloom on her relentless pursuit for change on a global scale

Supporting Individuals and Their Families with Rare Conditions: Strategies for Healthcare Professionals

Symptomatic

EDS & Me VLOG Episode Forty Four: Behind the Scenes of our Global Learning Conference!

EDS & Me VLOG Episode Forty Three: European Conference Season

Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders

An assessment of the current medical management of thoracic aortic disease: A patient-centered scoping literature review

Implementation of telemedicine in the care of patients with aortic dissection

Aortic dissection in pregnancy and the postpartum period

Lived experiences of people with or at risk for aortic dissection: A qualitative assessment

The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community

Consensus recommendations on how to assess the quality of surgical interventions

The mental health impact of aortic dissection

Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study

Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study

Lived experience is the why and the how that health systems need

AccessiBe's Spotlight Session with Lara Bloom

EDS & Me VLOG Episode Forty Two: Springtime in New York

RARE REV-inar Women in Rare science and research

EDS & Me VLOG Episode Forty One: Lots of fun in quarter one!

Rare Disease Month - The Lisa Burke Show

EDS & Me VLOG Episode Forty: Wrapping up the year

#RareShowcase23 Lightning Talk Lara Bloom - How project ECHO can help rare diseases

EDS & Me VLOG Episode Thirty-Nine: Madonna, Pumpkins and Everything in Between

EDS & Me VLOG Episode Thirty Eight: Summer

EDS & Me VLOG Episode Thirty Seven: Hopping around Europe

Handi-Link Radio Interview

EDS & Me VLOG Episode Thirty Six: Springtime in New York

EDS & Me VLOG Episode Thirty Five: Adapting to life as a Mama

Two Disabled Dudes Podcast - You Got This

EDS & Me VLOG Episode Thirty Four: Welcome To The World Lola!

3 Women with EDS who are shaping the future

Chromodiversity Podcast: Dazzling Zebras

VR Workforce Studio Podcast

EDS & Me VLOG Episode Thirty Three: Jingle All The Way

CNN Health

EDS & Me VLOG - Episode Thirty Two: Seasons Changing

EDS & Me VLOG - Episode Thirty One: A Very Busy Summer

LARA BLOOM

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