NORD’s organizational membership community provides a united force for advocacy, research and medical advancements, policy successes, public awareness and support for the 30 million Americans living with rare diseases. Our organizations represent a broad range of disease-specific communities and provide leadership to advance the goals we all share.
For the last 35 years since our inception, NORD has maintained the highest level of integrity and transparency in its governance; our reputation for leading with integrity – and with an unbiased patient voice – is known and respected on Capitol Hill and among stakeholders in the rare disease community.
Effective 2018, NORD has adopted a set of operating practices to ensure that its 501(c)3 patient advocacy Member Organizations maintain ethical standards and integrity from industry and other influences. Please email NORD’s Membership Team for assistance on meeting these qualifications.
Our Team can provide templates for:
*Conflict of Interest Policy for Board and Staff
*Medical Advisory Board Policies and Procedures
For National and International Membership:
Your Board of Directors must not directly or indirectly have a significant business relationship with your organization which might affect independence in decision making – including, but not limited to employment by a corporation or for-profit enterprise with a vested interest in your disease state, organization and policies. NEW
International Partnership is for umbrella organizations operating outside of the U.S. that NORD has a strategic partnership or Memorandum of Understanding with that outlines a shared commitment to improving the lives of rare disease patients and families through collaboration.
Organizations interested in International Partnership should contact
Debbie Drell, Director of Membership at firstname.lastname@example.org
The following are recommended to be submitted alongside your applications: