Lara Bloom

Lara Bloom

She/her/hers

President and CEO, The Ehlers-Danlos Society

UK

Lara Bloom is a global advocate for rare, chronic, and invisible conditions, specializing in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). She leads a globally recognized nonprofit advancing research, education, and patient support. Over the past year, Lara influenced revisions to the Declaration of Helsinki, expanded multimillion-dollar research initiatives, and shaped healthcare systems through international keynotes and policy consultation. Her leadership has improved diagnostic pathways, increased specialist care access, and connected thousands of individuals to vital services. She serves as Vice-Chair of the International Alliance of Patients’ Organizations (IAPO) and is a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine. Lara’s work is transforming how healthcare systems view and support people with invisible disabilities.