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.
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.
Members often have access to breaking news before it is generally known. We approach our members first when media, industry, government regulators (i.e. FDA) and other national stakeholders approach us for a grassroots connection. They have opportunities to participate in advocacy efforts, and they receive priority notification of registration and travel scholarships for NORD’s annual Rare Disease and Orphan Products Breakthrough Summit and Rare Impact Awards. NORD serves as U.S. national sponsor for Rare Disease Day and drug development conferences and passes along any benefit we receive, such as complimentary registration passes, to our member organizations first.
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.
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 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 email [email protected].
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.