On March 27, Emily’s Entourage (EE) heads to Washington, D.C. to attend Health Datapalooza 2019. Emily, EE co-founder, will participate in the mainstage opening session panel, where she will share the EE origin story and advice for other patients and caregivers. This convening is meant to highlight the patients and caregivers who have successfully disrupted or redesigned health care.
Since 2010, Health Datapalooza has become the main gathering place for people and organizations driving knowledge from health data and creating innovations that accelerate health policy and practice. Over two days, federal policymakers will rub elbows with health systems’ chief officers, Silicon Valley startups, and patients. As challenges facing health care continue to progress, this diverse group of big thinkers and do-it-yourselfers will collaborate with a single mission; to advance and rescue health care using data.
During the opening mainstage panel “Taking Charge of Your Own Health,” Emily will talk about how patients and families can take charge when there are no therapeutic options for them. With game-changing breakthroughs on the horizon for roughly 90% of those with Cystic Fibrosis (CF), Emily and her family realized that people with nonsense mutations of CF were being left behind.
Eight years later, EE has awarded over $3.5 million to research and currently has 11 active projects, all with the singular goal of developing life-saving therapeutics for those with nonsense mutations in the outlying 10% with nothing. As part of the conversation, Emily will touch upon how EE has worked tirelessly to stimulate drug development in a space where there wasn’t much before and mention the successes and challenges EE has faced along the way.
Emily will be joined by Doug Lindsay, a transformational thought leader, patient with a rare autonomic-adrenal condition and friend from Stanford Medicine X, to discuss how they each took charge of their own health circumstances and became patient advocates. The conversation will be moderated by Anil Sethi, former executive for Apple Health and current founder and CEO of Ciitizen, a start-up that focuses on empowering patients to have complete control of their health data.
Emily’s Entourage is incredibly grateful to be given such a large platform at Health Datapalooza 2019 to raise awareness of the critical work being done for nonsense mutations of CF and looks forward to sharing our insights and experience, learning from others, and building partnerships and collaborations.