Lara Bloom

Patient Leader

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specialising 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.


Bushey, ENG


Patient Leader Hero Advocating for Another Lifetime Achievement Best Kept Secret


Patient Leader Hero

For everything Lara does for the EDS community, raising awareness, promoting education and research, tirelessly advicating fir EDS and rare disorder patients.  — Emmanuelle

Lara is one of the most passionate leaders i have met. What makes her unique is her ability to connect not only patients, but also clinicians and scientists. Her uniqueness of connecting people through all levels of society, healthcare professions and policy officials. She is an example of that one person can make a difference.  — Mark

Lara is a rockstar to the ehlers-danlos patient community. She inspires, she leads from the front & she lifts all of us higher.  — Philip

Lara is an inspiration to all who meet her. A sufferer herself of EDS she has overcome her own battles by constantly striving to know more, achieve more and make breakthrough changes for others.  — Lisa

She always goes above and beyond to ensure that Ehlers Danlos Syndrome is makings it’s way to being more widely known around the world. She is a huge inspiration for the whole community as she paves the way for us to speak up and get the information out there.  — Samantha

Lara works tirelessly to improve the lives of those affected by Ehlers Danlos (and suffers from the condition herself). She is an amazing role model, talking at conferences around the world, raising awareness (including educating patients and medical professionals and governments), spearheading innovative collaboration, fundraising and research.  — Sue

Lara Bloom

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