CEO, EDS International Symposium
The Ehlers-Danlos Society
Lara Bloom is the Co-Executive Director of The Ehlers-Danlos Society and 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.
In Lara’s previous role at EDS UK, in just five years she went from being the only member of staff to managing a team of six staff and 45 volunteers and increasing their membership, social media presence and income substantially.
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.
From 2013–2015 Lara was part of the specialized rheumatology CRG (Clinical Reference Group) working with the NHS and 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 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.