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.

Rare disease community members at event.
Pamela Gavin

Chief Executive Officer

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Peter L. Saltonstall

President and CEO Emeritus, Senior Advisor


Ed headshot for rare disease website.
Edward Neilan, M.D., Ph.D.

Chief Medical and Scientific Officer

Rebecca headshot portrait rare disease community
Rebecca Aune

Director of Education Programs

Patrick Collins

Vice President of Community & Corporate Affairs

Prashant headshot photo rare disease community
Prashant Goel

Vice President of Information Technology

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

Neeta at rare disease conference event
Neeta Kotecha

Vice President of Finance

Janine Lewis

Director of Research Operations

Marybeth McAfee

Director of Medical Affairs

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Alexa Moore

Vice President of Development

Photo of jill, rare disease advocate
Jill L. Pollander, RN, MSN

Vice President of Patient Services

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Heidi Ross

Vice President of Policy and Regulatory Affairs

Photo of norine, rare disease advocate
Norine Schwarzchild

Vice President of Human Resources