Christina lives right outside Washington, DC in Bethesda, Maryland with her husband, Matt, and daughters Sophie (13) and Charlotte (8). Before joining Orchard Therapeutics, she led government affairs for bluebird bio, another rare disease gene therapy company. She also serves on the board of the US-based rare disease non-profit Global Genes. Christina is an active supporter of research for and education about her daugther Charlotte's ultra-rare neurodevelopmental disorder, NAA10. Before moving to the corporate side, Christina served as the Alliance for Regenerative Medicine (ARM)'s first-ever head of US Government Relations, where she leveraged the network, she assembled over the past 25 years on the ground in Washington, DC to advance the priorities of the regenerative medicine sector. With a deep background in policy, government relations, alliance building and issue advocacy, she is committed to shaping an environment in Washington conducive to the discovery, development approval and accessibility of durable, potentially curative cell and gene therapies. Before arriving at ARM, Christina built and led the Washington office of The Assistance Fund (TAF), where she advocated for patients to have access to all required clinical care, diagnostic testing, and treatment at an out-of-pocket cost within reach, regardless of socioeconomic status. Prior to that, Christina led policy and advocacy efforts to advance treatment and diagnostic opportunities for rare disease patients at the EveryLife Foundation, launching them for the first time in Washington, DC following their move from Novato, California. At the Pew Charitable Trusts, she worked with a broad range of partners to advance legislative goals to incentivize the development of new antibiotic drugs. Early in her career, Christina served as an analyst at the US Department of Health and Human Services, including with the Biomedical Advanced Research and Development Authority (BARDA). Christina has a Master of Public Health (MPH) with a concentration in epidemiology from the George Washington University School of Public Health. She is passionate about advocating, influencing, and shaping policies that provide access to new innovations for those impacted by rare diseases, and is motivated every day to advance these priorities as a direct result of her experience raising a child with an ultra-rare neurodevelopmental disorder.
With new and innovative treatments, better clinical and research options and emerging registry options, newborn screening has become an important discussion topic in the rare disease community. This multi-stakeholder panel will talk through the current state and federal landscape of NBS, and then turn to projections on the initiatives that could shape the future of NBS. Hear from patient advocates on the benefits of early screening and diagnosis, and from an industry partner about the work being done to support the addition of conditions to federal and state testing panels.