Executive Leadership Team
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Michael Pearlmutter
Chief Executive Officer
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Annie Kennedy
Chief Mission Officer
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Will Nolan
Chief Marketing & Communications Officer
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Trova O’Heffernan
Chief Operating Officer
Policy
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Lindsey Cundiff
Associate Director of Policy Programs
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Baillie McGowan
Director of Policy Research
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Kathryn Poe
State Policy Manager
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Dylan Simon
Senior Director of Policy
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Jamie Sullivan
Senior Vice President of Policy & Advocacy
Advocacy
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Syed Ejaz
State Advocacy Manager
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Kendly Jones
RARE Advocates Program Manager
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Shannon von Felden
Vice President of Advocacy
Patient Community Engagement
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Amy Aikins
Director of RARE Access Program
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Abbey Hauser
Associate Director of Community Engagement
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Mary Michael Kelley
Vice President of Patient Community Engagement
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Stephanie Riordan
Senior Director of Patient Programs
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Laura Romano
RARE Young Adults Program Manager
Operations
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Lina Arslanian
Associate Director of Finance
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Leigh Bethea
Director of Events
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Charey Jackson
Executive Administrator
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Alyssa Terwall
Vice President of Operations & Events
Development
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Carrie Borrello
Annual Giving Manager
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Ted Brasfield
Vice President of Alliance Development
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Stephanie Siddiqi
Director of Development
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Collin Sovie
Alliance Development Manager
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James Uyeda
Vice President of Philanthropy
Communications & Marketing
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Brenda Colmenares
Director of Communications
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Katie Wagman
Policy Communications Manager
More from RARE
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Our Board
Our Board of Directors is comprised of a diverse group of individuals who are both personally and professionally dedicated to the 30 million Americans living with a rare disease.
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Our Story
Since our founding in 2009, the RARE Foundation has reshaped the rare disease landscape thanks to the power of our community.
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Careers
Our expert team has earned recognition as a trusted, nonpartisan leader in the rare disease space for more than 15 years by educating and activating patients and their families.
