Coalition pour la médecine personnalisée - Séance d'information et de lobbying à l'intention des membres du Congrès

Ms Kramer-Golinkoff goes to Washington! Waving hello to the White House she visited a few times last year, Emily headed to the Hill last week to lobby Senators, their staff and other policymakers on the urgent, unmet needs in personalized medicine for those with rare diseases like Cystic Fibrosis.

Emily started her day in the United States Senate’s Kennedy Caucus Room, sitting on a panel organized by the Personalized Medicine Coalition alongside representatives from the pharmaceutical and diagnostics industries. The topic at hand was how personalized medicine can foster innovation and improve healthcare quality and lower costs, and what public policies can accelerate or stifle the field’s development.

Senator Ed Markey of Massachusetts (check him out at the podium!) gave the keynote address at the briefing. As a panelist, Emily underlined the message that targeted therapies are the only hope for a future for patients like her and shared the trailblazing work that Emily’s Entourage is doing to advance precision medicine for rare nonsense mutations of Cystic Fibrosis. Edward Abrahams, President of the Personalized Medicine Coalition, wrapped up the talk with a lively Q&A

In the afternoon, Emily continued the conversation with Senate Health, Education, Labor and Pensions Committee (HELP) staff, where they discussed public health policy with a focus on the FDA. She then met with Senator Bob Casey from her home state of Pennsylvania and his health care staff.

Emily hopes that her time on the Hill lent a human face to the promise of personalized medicine and the incredible opportunity before us. On a personal level, it was an enlightening day — the ultimate crash course in public health policy — and an invaluable opportunity to share the amazing strides that EE is making as the ultimate embodiment of personalized medicine in action.