Lara Bloom

International Executive Director

rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related disorders.

Lara manages coordinated medical collaboration, raising funds for research, and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert.

From 2013–2015, Lara was part of the specialised 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 the Rare Disease International Patient Advocacy Committee. Before joining the Society Lara ran EDS UK from 2010-2015.

In 2016 Lara completed 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 American Journal of Medical Genetics (AJMG) March 2017 and serves on the steering committee of the International Consortium for EDS and Related Disorders.