News & Media

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

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...

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...

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

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....