Updates: HEDGE, DICE Registry, and Biobank

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• Linda and Lara dig into how outdated terminology and dismissive provider attitudes continue to shape patient experiences in ways few talk about openly.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.

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