Value of NORD Membership

Discussion Forum

By joining NORD, you are connecting to major thought leaders in the rare disease community. The high-touch guidance that our members receive helps them navigate the ever-evolving healthcare landscape. NORD 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 member leaders pose questions and engage in discussions to crowd-source solutions to their nonprofit challenges and research issues.

Affinity Groups

NORD members can take advantage of regular touchpoints with like-minded professionals through NORD’s Member Affinity Groups. An Affinity Group is a small, focused gathering of individuals who share common interests, experiences, or roles within NORD’s member organizations. These groups provide a candid space for more targeted networking, creating opportunities for meaningful dialogue and peer learning among like-minded professionals. Participants will discuss shared challenges, best practices, and collaborate on specific topics.

NORD Claim Your Care Program

NORD’s Claim Your Care program is designed to raise the knowledge level of our member organizations specific to health care coverage and insurance. NORD Claim Your Care allows our members to better advocate on behalf of their constituents.

Meetings & Webinars

NORD provides educational opportunities virtually and in-person. Regional membership meetings, including the Annual Membership Meeting before the NORD Summit, facilitate connections between members, provide opportunities to discuss relevant topics of interest, and allow access to new resources. NORD develops educational webinars for our members based on their goals. These webinars feature subject matter experts providing best practices and key insights to build capacity.

Advocacy Academy Training

NORD members have complimentary access to the Advocacy Academy in partnership with CURA Strategies. The 90-minute course is designed to teach the basics of advocacy, enabling organizations to focus their efforts on training advocates about specific policy issues. The program covers everything from the fundamentals of advocacy and effective storytelling to navigating congressional meetings, federal appropriations, and social media outreach, equipping participants to make a meaningful impact on Capitol Hill. Also included is a video highlighting the Orphan Drug Act.

BoardSource Subscription

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.

Policy Access

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.

PLS/EL-PFDD Roadmap & Resources

NORD members are invited to participate in Patient Listening Sessions (PLS) and Externally Led Patient Focused Drug Development meetings (EL-PFDD) offered through the Food and Drug Administration’s (FDA) Office of Patient Engagement. These meetings are one way for patient communities to provide FDA review staff with a better understanding of patient/caregiver perspectives on risk tolerance, disease burden, treatment burden, impact on daily activities, quality of life, and what is important to patients for consideration in medical product development programs.

The Office of Patient Engagement has partnered with NORD to provide helpful tools and guidelines to design PLS and EL-PFDD meetings. NORD offers administrative support and coordination of these meeting resources to members who wish to host their own EL-PFDD.

DEI Resources

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.