In this episode, Dr. Linda Bluestein sits down with Lara Bloom, President and CEO of The Ehlers-Danlos Society, for a revealing look behind the curtain of the Society’s ambitious global roadmap to 2026. What will it take to finally change the trajectory for people with EDS (Ehlers-Danlos Syndromes) and HSD (Hypermobility Spectrum Disorders)? Why have progress and awareness lagged for so long? And what is happening right now around the world that could shift everything?
Together, they unpack the systemic obstacles still tripping up patients, from years-long diagnostic delays and rampant misinformation to critical gaps in research, policy, and clinical education. Lara shares the driving force behind her vision for global change and the monumental international effort unfolding to move EDS and HSD into the spotlight they’ve long deserved.
If you’ve ever wondered why the system feels stuck, or what it might take to finally break through, this conversation offers rare insight and genuine hope.
Takeaways:
Lara reveals why global alignment across policy, education, and clinical care could be the missing key to major breakthroughs for EDS and HSD.
The episode exposes the hidden consequences of misdiagnosis and why early recognition, especially in children, may be more urgent than most clinicians realize.
Linda and Lara dig into how outdated terminology and dismissive provider attitudes continue to shape patient experiences in ways few talk about openly.
Lara shares how her personal journey fuels her global leadership and why patient voices are becoming impossible to ignore in research, advocacy, and policy.
The international symposium and roadmap point toward real momentum, but lasting change will require unprecedented collaboration across borders and specialties.
Want more Lara Bloom?
Website: https://www.larabloom.com/
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Youtube: @LaraBloom
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Chapters:
00:00 Introduction to EDS and Primary Care
00:39 Welcome to the Bendy Bodies Podcast
00:54 Introducing Lara Bloom and EDS Initiatives
02:49 Exciting Research Developments in EDS
04:57 Understanding the Hedge Study
08:49 Vaccination and EDS: A Complex Topic
12:19 Masking and Travel Tips
15:31 Vitamin C and Immune Health
17:33 Updates on Hedge and DICE Registry
20:05 The Road to 2026: Challenges and Changes
27:02 The Importance of Accurate Diagnosis
30:25 Community Experience Survey and Lived Experiences
31:17 Advice for Clinicians Managing EDS Patients
31:46 Hypermobile Artists and Shoppers
32:02 Supporting EDS Nonprofits
32:33 Introduction to Lara Bloom and the Road to 2026
33:19 Research Funding and Prioritization
36:30 Natural History and Prevalence Studies
38:09 Sex and Gender Specific Considerations
39:14 Advocacy at the World Health Assembly
40:37 Advice for Clinicians and Patients
46:42 Getting Involved in EDS Advocacy
48:50 Free and Low-Cost Educational Resources
49:42 Provider Directory and Road to 2026
53:35 Future of EDS and HSD Care
58:28 Hypermobility Hacks and Final Thoughts
01:01:21 Podcast Conclusion and Call to Action
