The Road to 2026 - The EDS Society

The Road to 2026 - The EDS Society, presented by Prof Lara Bloom, CEO of The Ehlers-Danlos Society at the Vascular EDS Conference 2025.

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015.

Lara leads coordinated medical collaboration, raising funds for research and focuses on global progression, education and awareness. Her passion is pushing boundaries and fighting for progression in Patient Engagement and Global Collaboration, and she was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, in March 2020, which commemorated ten years in the field of patient engagement and advocacy leadership. She is a published author in various renowned journals and speaks worldwide at conferences, policy meetings, corporate and fundraising events, and academic lectures as an expert keynote speaker.

The Road to 2026 is the path and process toward an update of the 2017 International Classification of the Ehlers-Danlos syndromes. The aim of this update is to advance the understanding and management of EDS and HSD on a global scale, reducing the time to diagnosis, and improving care. This work is anticipated to be completed and published in late 2026.

The work will involve a thorough examination of what is currently known about EDS and HSD and an assessment of what is needed to improve global access to diagnosis and care.

For more information about The Road to 2026 visit https://www.ehlers-danlos.com/road-to...