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.
STAFF

Jackie Avial
Director of Content, Marketing & Communications

Leah Barber
Director of Grassroots Advocacy

Patrick Collins
Vice President of Community & Corporate Affairs

Victoria Gemme
Director of Policy and Regulatory Affairs

Cheryl Herbert
Vice President of Marketing & Communications

Neeta Kotecha
Vice President & Chief Financial Officer

Janine Lewis
Director of Research Operations

Lori MacNeill
Controller

Julie Manus
Director of Development

Ariel Markowitz-Shulman
Chief of Staff

Marybeth McAfee
Director of Medical Affairs

Jill L. Pollander, RN, MSN
Vice President of Patient Services

Heidi Ross
Vice President of Policy and Regulatory Affairs

Norine Schwarzchild
Vice President of Human Resources

Tracey Sikora
Vice President of Research & Clinical Programs

Alli Ward
Director of Membership