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President & CEO of The Ehlers-Danlos Society

Academic Affiliate Professor of Practice in Patient Engagement and

Global Collaboration (Penn State College of Medicine)

Expert in Patient Engagement & Advocacy for Rare, Chronic & Invisible Conditions

Public Speaker & Campaigner


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 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.


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 the Global Ambassador for Global Genes and 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, Working Group Member of the GenTAC Alliance Patients, Families, and Clinicians, and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency.   


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.


Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.

Current Advocacy Work

The Ehlers-Danlos Society

President & CEO


Global Genes

Global Strategic Advisor 

Rare Diseases International

Advocacy Committee member

NIHR CONCORD: CO-ordiNated Care Of Rare Diseases


European Reference Network Groups RECONNECT & VASCERN

Patient Expert

GenTAC Alliance Patients - Families, and Clinicians

Working Group member


Expert Advisor

Medicines and Healthcare Products Regulatory Agency

Patient Group Consultative Forum Member

The European Patients’ Academy (EUPATI)


International Rare Diseases Research Consortium (IRDiRC)

Telehealth Taskforce Member 

Penn State College of Medicine 

Academic Affiliate Professor of Practice in Patient Engagement & Global Collaboration

World Health Organization (WHO) 
Patient Expert

Stakeholder Network for Rare Diseases - EU Health Policy 

Patient Expert 

Rare 2030 Panel of Experts 

Patient Expert

European Haemophillia Consortium 

Think Tank Council Patient Expert

Innovative Medicines Initiative (IMI)
Patient Expert 

Medicines & Healthcare Products Regulatory Agency 

Patient Expert 

Our Mission

More information about any of the organisations Lara works with can be found via LinkedIn 

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