Lara Bloom

President and CEO
The Ehlers-Danlos Society

Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration (Penn State College of Medicine)

Member of the International Consortium for EDS and related disorders


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.

Lara regularly works with umbrella organisations lobbying at government level internationally. In addition to her role as President and CEO of The Ehlers-Danlos Society, she is an Advocacy Committee Member for Rare Diseases International, Co-Investigator in the NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, Expert Advisor in the European Reference Network Groups RECONNECT & VASCERN, Expert Advisor to PARADIGM & EPF, Task Force Member for the IRDiRC Telehealth Task Force, Panel Member: Panel of Experts for the WHO (World Health Organization) collaborative global network for rare diseases program (CGN4RD), Trustee and Treasurer for IAPO (International Alliance of Patient Orgs), Board member for Genetic Alliance UK, and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency. Lara is also a fellow of The Royal Society of Medicine.

In 2016 Lara completed expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI.

Lara lives in Greater London with her wife and daughter.

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