Lara Bloom


Lara Bloom is the President and CEO of the Ehlers-Danlos Society. Lara is a patient expert and advocate for rare diseases, specializing in the Ehlers-Danlos syndromes. In 2012 she carried the torch at the London Paralympic Games. Lara Bloom was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, United States of America, in March 2020.

Personal Life

In 2007, she went to South Africa with the Orthodox Jewish organization Aish, and helped set up a charity for AIDS orphans called the African Social Action Project.
Lara Bloom is married to her wife, and lives in London. She was diagnosed with Ehlers-Danlos Syndrome at the age of 24.

Patient Engagement and Global Collaboration

Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders, chronic illnesses and rare diseases, Lara Bloom was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, United States of America, in March 2020.

Ehlers-Danlos Activism

Lara Bloom joined the board of The Ehlers-Danlos National Foundation, now The Ehlers-Danlos Society in 2014, as a representative of EDS UK, where she served the chief operating officer, as well as the development manager.
Lara Bloom made a documentary about how she walked a marathon, which took her eight hours and 18 minutes. Through the documentary she raised £10,500. The documentary was entitled "Issues with My Tissues", and was published in 2015.
Lara Bloom was one of the authors on a paper entitled "The international consortium on the Ehlers–Danlos syndromes", as well as "The 2017 International Classification of the Ehlers–Danlos Syndromes."
She is a member of the International Consortium on Ehlers-Danlos Syndromes and Related Disorders.

Press Attention

Bloom's activism has gained press attention from many sources, including the Jewish Chronicle, Bowel & Cancer Research, and the Watford Observer. Some topics referenced include her documentary, "Issues with My Tissues", her recognition in a list of "Women of Achievement" in 2018, and her torch-carry in the London Paralympic Games.