LARA BLOOM

President & CEO:

The Ehlers-Danlos Society

Patient Engagement & Advocacy Expert

for Rare, Chronic & Invisible Conditions

Public Speaker & Campaigner

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Follow my journey advocating and representing the patient voice in rare and invisible diseases worldwide, as well as gaining an insight into my personal experience as a patient.

© 2019 Lara Bloom

About

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

Public Speaker & Campaigner

President & CEO of The Ehlers-Danlos Society

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.

Current Advocacy Work

The Ehlers-Danlos Society

President & CEO

 

Global Genes

Global Ambassador


Rare Diseases International

Advocacy Committee member


NIHR CONCORD: CO-ordiNated Care Of Rare Diseases

Co-Investigator


European Reference Network Groups RECONNECT & VASCERN

Patient Expert


GenTAC Alliance Patients - Families, and Clinicians

Working Group member


PARADIGM & EPF  

Expert Advisor


Medicines and Healthcare Products Regulatory Agency

Patient Group Consultative Forum Member


The European Patients’ Academy (EUPATI)

Fellow 

 

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