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
