Rare Diseases

Biography

Lara Bloom is the international Executive Director 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. Lara manages coordinated medical collaboration, raising funds for research and focus on global progression, education and awareness. Lara speaks at conferences all over the world, lectures to medical students and professionals and supports specialists in the field by offering her experience as a leading patient expert in rare diseas-es. Laras current advocacy work includes: - Rare Disease UK - Patient Empowerment Group member -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 -EUPATI Fellow

Research Interest

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