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...
top of page
VLOG
News & Media
Search
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...
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...
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...
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....
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....
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...
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 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...
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...
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...
Oct 8, 2021
Pain-Free Fitness: The Podcast
Your Pain is NOT Invisible with Professor Lara Bloom Lara speaks with Mariah Heller to discuss Ehlers Danlos, Chronic Pain, and...
Sep 3, 2021
Rare Diseases International: Meet the Patient Advocates
Lara takes part in RDI's series of conversations with representatives of the global rare disease patient movement. Watch. Length: 8mins...
"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
bottom of page