Value of NORD 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.

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 hundreds of leaders from our rare disease member organizations pose questions and engage in discussions to crowd-source solutions to their nonprofit challenges and research issues.


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 can get direct access to the expertise of our seasoned and prestigious policy staff.


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.

Diversity, Equity, and Inclusion (DEI) Initiatives

NORD and the rare disease community are working to fight for DEI as a community. We have developed resources to educate leaders, advocates, and nonprofit organizations about how marginalized groups within the rare disease community are affected by a lack of DEI. It is our belief that small steps can build into important and essential change, and these resources are the tools to help on that journey. We have developed three-part easy-to-use toolkits in both English and Spanish that contain background information, worksheets, a glossary of terms, and more, as well as our DEI Webinar series that complements our three toolkits.

Rare Cancer Coalition®

NORD’s Rare Cancer Coalition® is the only united group of rare cancer patient-led 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. The Rare Cancer Coalition® is open to NORD member organizations. For more information about the coalition, please contact us.


NORD membership includes a complimentary annual subscription to BoardSource (valued up to $3,500), the number one resource for board management in the country. BoardSource offers in-depth resources and tools for strategic planning, fundraising, maintaining good governance, and addressing diversity, equity, and inclusion within an organization.