027: Lara Bloom, International Executive Director of the Ehlers - Danlos Society
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Lara Bloom is the international Executive Director of the Ehlers-Danlos Society. Finally diagnosed with EDS at the age of 24 (after many years of chronic pain and frustration), she channeled her healing into patient advocacy. Her job is to raise global awareness of rare, chronic, and invisible diseases, with a focus on 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. From 2013–2015, Lara was part of the specialized rheumatology CRG (Clinical Reference Group) working with the NHS, and she regularly works with umbrella organizations lobbying in British 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, she 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.
027: Lara Bloom, International Executive Director of the Ehlers - Danlos Society
027: Lara Bloom, International Executive…
027: Lara Bloom, International Executive Director of the Ehlers - Danlos Society
Lara Bloom is the international Executive Director of the Ehlers-Danlos Society. Finally diagnosed with EDS at the age of 24 (after many years of chronic pain and frustration), she channeled her healing into patient advocacy. Her job is to raise global awareness of rare, chronic, and invisible diseases, with a focus on 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. From 2013–2015, Lara was part of the specialized rheumatology CRG (Clinical Reference Group) working with the NHS, and she regularly works with umbrella organizations lobbying in British 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, she 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.