NORD Member List

Since our inception in 1983, NORD has maintained the highest level of transparency in how we are structured and how we represent the rare disease community. Our reputation for leading with integrity – and with an unbiased patient voice – has been developed over three decades of meaningful action on behalf of individuals affected by rare disease. NORD is known and respected on Capitol Hill and among stakeholders in the rare disease community – and requiring all members to meet Membership criteria helps us maintain that reputation. By adopting a demanding set of criteria, NORD ensures that our 501(c)3 patient advocacy Member Organizations embody high ethical standards and are free from any outside influences that might interfere with the voice of the patients we seek to represent.

Platinum level Membership: Represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, registries, or any work involving a Medical Advisory Board.

Gold level Membership: Available for those 501(c)(3) tax-exempt organizations that are not currently engaged in medical education, research funding, RFP review, registry coordination, or any work involving a Medical Advisory Board. This level of Membership allows patient support organizations to gain access to NORD’s community, resources, and services.

Learn more about NORD’s Membership criteria here.