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Value of Membership

NORD was founded on the principles of collaboration and a united voice, and we provide guidance and support at all phases of development, as organizations evolve. While we offer many programs and services for all patient organizations, the best way to take advantage of the full range of benefits is to join NORD’s membership network.

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Peer Networking and Guidance

By joining NORD, you are connecting to the major influencers in the rare disease community. The high-touch guidance that our members receive helps them navigate the ever-evolving healthcare landscape. Many NORD resources are often available free to the public, but membership brings unparalleled opportunities for peer-mentoring and networking with NORD staff and other organization leaders. This includes access to an exclusive Facebook group where member organization leaders can pose questions and engage in discussions to crowd-source information.



NORD provides members with analyses of legislative and regulatory activity.  Through sign-on letters, webinars, briefings, and workshops, members gain insight into pressing policy issues and add their perspectives, views and voice to these key issues.  Members also have opportunities to join NORD and its network to advocate on behalf of those salient policy issues through its state coalitions and Rare Disease Day efforts.



Members often have access to breaking news before it is generally known. They have opportunities to participate in advocacy efforts, and they receive priority notification of scholarships and discounts for NORD’s annual Rare Disease and Orphan Products Breakthrough Summit and Portraits of Courage events.



NORD turns to its members when media opportunities arise, and we utilize our platforms to promote your organizational priorities and efforts. This includes sharing news about your events, requests for proposals, research breakthroughs, employment opportunities and organizational milestones through our monthly e-newsletter, and other communications channels. We encourage guest posts from our members on the NORD blog.

Promote Organization’s News 



Educational webinars and regional membership meetings provide opportunities to gain key insight into the policy process, to interact with senior government officials, and to build capacity by adopting best practices.


Rare Cancer Coalition

NORD’s Rare Cancer Coalition is the only united group of rare cancer advocacy organizations in the United States, providing members with opportunities for information sharing, networking, collaborative educational programs, awareness raising and a presence at major conferences. The objective of the coalition is to form a close-knit, multi-stakeholder community to work collaboratively on issues that the greater rare cancer community faces. For more information about the coalition, please email

Apply Today!

Get started by filling out NORD’s Application for Organizational Membership.