We had the pleasure of speaking with Lara Bloom, President and CEO of The Ehlers-Danlos Society. Lara raises global awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Tune in to hear Lara's insights on the people, projects, and global effort behind increased awareness and advocacy for those living with hEDS, HSD, and related disorders.

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https://youtu.be/1SP2garPglg

Show Notes

0:00 Introduction

1:30 Lara speaks to the 14 years she has spent working in this field and how the awareness and understanding about hEDS and HSD has evolved

6:59 How The Ehlers-Danlos Society created opportunity and accessibility during the pandemic

11:15 The role of the "patient" expert, client-centred care, verbiage and validation

16:00 How diagnosis and management for hEDS and HSD in the US, UK, and elsewhere varies

21:00 Personal experience can be a spark for change while not being the driver longterm

22:41 How The Ehlers-Danlos Society team is driven and motivated to keep going

25:00 The benefits and innovation that comes from being online and in-person when raising awareness

28:30 Pediatric guidelines on hypermobility spectrum disorders

31:00 Exciting new and upcoming projects with The Ehlers-Danlos Society

35:42 How to get involved in research if you have hEDS or HSD

Recommended Reading & Listening

https://www.ehlers-danlos.com/eds-global-registry/

https://www.larabloom.com/

https://www.ehlers-danlos.com/

https://www.ehlers-danlos.com/echo/

https://www.movewelldaily.com/ehlers-danlos-syndrome-eds/

https://www.movewelldaily.com/after-diagnosis-heds-and-hsd/

https://www.movewelldaily.com/managing-heds-hsd-flares/

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