A graduate of Birkbeck’s BA Global Politics and International Relations, Lara Bloom is President and CEO of The Ehlers-Danlos Society and responsible for raising global awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders and related disorders.  

As someone with an EDS diagnosis, before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015 and currently works with a range of umbrella organisations lobbying governments internationally. Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She co-authored the subsequent classification publication in the American Journal of Medical Genetics and serves on the steering committee of the International Consortium for EDS and Related Disorders. 

Commemorating ten years in the field of patient advocacy, Lara was appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine in 2020.