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Today we sat down virtually with the newest member of the ARC team, Vanessa Boulanger who has recently joined ARC as the  Executive Director of Strategic Partnerships. Vanessa brings over 15 years of experience centering cross-sector collaboration in pursuit of health and social equity to her position at ARC.

She currently is an appointed member of the Patient-Centered Outcomes Research Institute (PCORI) Advisory Panel on Rare Diseases. Prior to joining ARC, Vanessa was the Director of Research at the National Organization for Rare Disorders (NORD). With her experience, Vanessa is ideally positioned to build collaborative partnerships and innovative initiatives in the amyloidosis field to advance research and meaningfully benefit patients.


Q: Tell us about your background and what led you to the rare disease field!

I started my career in international development working globally with underserved, marginalized populations to build community-driven priority action plans. Through this work, I learned early on that many development projects are rooted in health-related inequities, which led me to public health. I completed my graduate work at the Harvard T.H. Chan School of Public Health, where I worked on specific health impacts, such as HIV/AIDS and maternal mortality, while also learning about the underlying systems that perpetuate health disparities and inequitable health outcomes. With this framework, I have been fortunate to build relationships and cross-sector programs in the rare disease field, bringing both a population and public health lens to issues and challenges specific to rare diseases.

Prior to joining ARC, I led the research and scientific portfolio for the National Organization for Rare Disorders (NORD), which included setting the strategy for collaborative initiatives framed around data collection, data sharing, the development of endpoint measures, building multi-stakeholder consortia, and case studies to advance regulatory science.

Since joining the wonderful team at ARC, I have reflected on how remarkable and fortunate I am to be in a leadership position that sits squarely at the intersection of work that I am deeply passionate about – research, strategy, and community engagement – and that brings together so many components of my previous experiences.

Q: What are some of ARC’s projects that you are most excited about working on?

It is really hard to choose from all of the excellent initiatives that ARC leads! I am eager to build relationships across stakeholders and work collaboratively to establish consortium-driven approaches to innovation within the amyloidosis field. And I am excited about some early strategic conversations around building new frameworks for capacity-building, accelerating scientific priorities, and an integrated approach to equitable, inclusive, and accessible research and clinical care.

Q: We would love to learn a few things about the person behind the Executive Director of Strategic Partnerships role!

I currently live in Connecticut with my family, though am originally from Canada, raised in New York. I am a recent convert to all things Peloton, and most weeks can be found baking bread, crafting (I’m trying my hand at macrame) and caring for my garden and chickens. This summer I have plans to glamp in a tree house in Vermont, which I am sure will be a dream come true for my two sons. And, most importantly, I am eager to meet and partner with all of you in the amyloidosis community in the very near future!