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community advocates

Lara Bloom

Community Leader
President & CEO
The Ehlers-Danlos Society
Office 7, 35-37 Ludgate Hill
London, United Kingdom

Lara Bloom, an EDS patient diagnosed at age 24 is the President & CEO of The Ehlers-Danlos Society, responsible for globally raising awareness of The Ehlers-Danlos syndromes and hypermobility spectrum disorders (HSD). She manages coordinated medical collaboration, raising funds for research and focusing on the progression of EDS and HSD throughout the world.

Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the AJMG, March 2017 and serves on the steering committee of the International EDS Consortium.

Lara was part of the specialized rheumatology CRG (Clinical Reference Group) working with the NHS from 2013–2015. She regularly works with umbrella organizations lobbying in parliament. She is a member of the Patient Empowerment Group for Rare Disease UK and in 2016 Lara graduated after completing expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI.

Lara speaks at conferences all over the world, lectures to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert in rare diseases. She has been a Director on the board of Trustees for the USA EDS charity ‘EDNF’ since 2014 as their International Liaison.

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