Education & Awareness Videos

Listen as Lara discusses her journey with Ehlers-Danlos Syndrome (EDS), her advocacy work, and the importance of community support. The conversation covers the challenges of living with a chronic illness, the significance of accurate diagnosis, and the role of personal experience in advocacy. Lara shares insights on the law of attraction, the impact of misinformation in health, and the importance of fundraising for research. The episode concludes with a discussion on the poli

Lara began at a powerful conference exploring the True Faces of Rare, highlighting the real, lived experiences behind the statistics. From there, she made her way to BBC Broadcasting House to record an interview for the #IamNumber17 campaign. It was an incredible opportunity to share her journey with Ehlers-Danlos syndrome - shining a light on the realities of living with a rare condition, the challenges of getting a diagnosis, and the importance of being seen and heard. We'

What does it take to live with Ehlers-Danlos Syndrome and still lead a global movement for change? 🌍   In this episode, Lara Bloom shares her inspiring journey from navigating her own diagnosis to becoming one of the most influential advocates for rare, chronic, and invisible conditions worldwide. Lara opens up about balancing health, motherhood, and international advocacy while pushing for research, awareness, and medical collaboration. She also shares practical advice on m

Watch this instagram live recording of Lara speaking to Carey about disability representation, authentic stories, and Carey's new film, 'Where did the adults go?' (directed by Courtney Marsh) Watch here

Join Lara & Zac for an hour long discussion where they covered: The current diagnostic criteria for EDS and where they fall short The challenges of living with EDS, from daily symptoms to systemic barriers What's ahead with efforts to refine and improve diagnostic criteria Watch here

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

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

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

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

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

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

A strong patient advocate, Lara has a passion for pushing boundaries and fighting for progression DE&I in healthcare and LGBTQIA+ rights....

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...

Lara is interviewed by Emma Sutcliffe about her story and journey. Click here to listen to episode.

On June 11, 2024, Global Genes hosted a forum for stakeholders in the rare disease community to discuss their intersectionality as part...

In this episode, Dr. Linda Bluestein, the Hypermobility MD, hosts a captivating conversation with Lara Bloom, President and CEO of the...

From stripes to strength: How the Ehlers-Danlos Society transforms lives through advocacy, research and community support. Click here to...

Dealing with a rare condition can be a daunting experience for individuals and their families. Rare diseases, by their very nature, often...

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

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

The Ehlers-Danlos Society Extension for Community Health Care Outcomes (EDS ECHO) is a portfolio of teleconferencing programs developed...

Thoracic aortic aneurysm and dissection are complex diagnoses that require management by multidisciplinary providers using a variety of...

Telemedicine uses telephone-based or any form of digital communication for remote clinical services. It has been a field of interest for...

Pregnancy-associated aortic dissection (AD) is a rare event, with an incidence of 0.0004% per pregnancy. The work of the Aortic...

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...

Understanding what matters most to patients can help guide research in a direction that is best situated to provide evidence that is...

Postoperative complications represent a major public health burden worldwide. Without standardized, clinically relevant and universally...

Although the topics of surgical techniques and medical therapies have been widely studied in aortic dissection (AD), studies examining...

Background: A condition is defined as rare if it affects fewer than 1 in 2000 people in the general population. Limited evidence suggests...

Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health,...

Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their...

Lara shares in this article these & other forward-looking reflections on the future of patient advocacy, professionalisation, and the...

Lara is interviewed by Josh Basile as part of accessiBe's spotlight sessions - this is a series dedicated to conversations with...

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

To mark International Women’s Day 2024, Lara is interviewed on a special episode of the RARE Rev-inars, celebrating women in rare disease...

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

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....

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

At the London Rare Disease Showcase, Lara shared the work of The Ehlers-Danlos Society using project ECHO to help rare disease, with a...

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...

This program focuses on disability issues. Host Cam Wells explores all sides of this comparing and contrasting with able bodied life....

Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...

Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...

You Got This, Mental Health featuring Lara Bloom – There are many challenges living with a disability. On top of the physical...

Join me around the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President...

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...

Lara joins Chromodiversity's Elliot Polack to discuss how improved classifications and better awareness of EDS and HSD is resulting in...