NORD’s Leadership Team

NORD is uniquely focused on purposefully elevating care, advancing research, and driving policy for the 30 million Americans living with rare diseases and their families. We have a long-standing and firmly rooted position in the rare disease community, based on nearly 40 years of positive impact, fueled by the breadth and depth of our experience and expertise.

We provide mentorship, education, and support to more than 300 disease-specific patient organizations, more than 15,000 individual advocates, as well as millions of individuals in the community.


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Pamela Gavin

Chief Executive Officer

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SENIOR ADVISOR

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Peter L. Saltonstall

President and CEO Emeritus, Senior Advisor


STAFF

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Edward Neilan, M.D., Ph.D.

Chief Medical and Scientific Officer

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Rebecca Aune

Director of Education Programs

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Patrick Collins

Vice President of Community & Corporate Affairs

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Aliza Fink

Director of Research Programs

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Prashant Goel

Vice President of Information Technology

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Cheryl Herbert

Vice President of Marketing & Communications

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Karin Hoelzer

Director of Policy and Regulatory Affairs

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Jennifer Huron

Director of Community Relations

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Neeta Kotecha

Vice President of Finance

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Janine Lewis

Director of Research Operations

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Marybeth McAfee

Director of Medical Affairs

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Alexa Moore

Vice President of Development

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Jill L. Pollander, RN, MSN

Vice President of Patient Services

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Heidi Ross

Vice President of Policy and Regulatory Affairs

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Lisa (Phelps) Sarfaty

Vice President of Community Engagement

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Norine Schwarzchild

Vice President of Human Resources