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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? List

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'