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Board of Directors

Emily Milligan

Emily Milligan

Emily is an advocate dedicated to improving the lives of people through better health and social equity. With a background in public health and international relations, she brings decades of experience in managing complex research and product development (R&D) portfolios for medically underserved populations. Previously, Emily held instrumental roles at renowned institutions, including the United Nations in Brazil and Nicaragua, as well as key positions at Columbia University and New York University.

Her expertise in R&D management was further honed during her tenure at JDRF, where she led research operations and scientific teams, overseeing an average annual $100 million research portfolio. At JDRF (formerly known as “Juvenile Diabetes Research Foundation”), Emily spearheaded the launch of a $200 million venture fund dedicated to investing in companies developing life-saving products for individuals living with type one diabetes. Her strategic vision and leadership were instrumental in driving impactful research initiatives and fostering innovation in the sector.

Since joining the Barth Syndrome Foundation in 2018, Emily has emerged as a prominent thought leader in the ultra-rare disease space, driving the organization to the forefront in the eyes of the U.S. Congress, the FDA, and peer coalitions. She has navigated the foundation through complex dynamics with the FDA and augmented interest from academia and industry in ultra-rare drug opportunities. Emily believes in the rare disease community's duty to help each other, stating that advancing the mission of one progresses the missions of all. Her commitment to the cause has deepened over time, evolving into a personal loyalty.

Outside of her professional commitments, Emily cherishes her role as a parent to four children and young adults. She also finds great joy in providing a loving home to rescue dogs, self-declaring herself a “foster failure.” An avid lover of nature, Emily feels most at home in remote areas of the Colorado high country where she mountain bikes, skis, and spends time on her family farm. She is passionate about maintaining green spaces in her community for current and future generations to experience similar wonder and peace.

Emily is deeply passionate about addressing contemporary challenges that not only impact people living with Barth syndrome but more broadly all who can benefit from a more just world. Her leadership at Barth Syndrome Foundation is fueled by a strong commitment to making a difference that extends beyond her professional endeavors, reflecting her dedication to creating a positive impact in the lives of others.

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