Lara Bloom

Collaborator•Advocacy Leader Rare,Chronic & Invisible•Public Speaker & Campaigner•Lived Experience Champion•Certified Non-Profit Executive•LGBTQIA+ I am 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. I manage coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. I speak at conferences all over the world, lecturing to medical students and professionals, and supporting specialists in the field by offering my experience as a leading Patient Expert. I regularly work with umbrella organisations lobbying at government level internationally. In addition to my role as President and CEO of The Ehlers-Danlos Society, I am the Global Strategic Advisor 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 I completed expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI. I played a key role in the recent international effort to re-classify EDS and create management and care guidelines. I was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017 and serve 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, I was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.