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Jan. 20, 2020

TOPIC: Featured News, Patients & Members

NORD Reaches 300 Members!

Posted by Valaree DonFrancesco

At NORD we are extremely proud to welcome our 300th member organization! Our Odyssey is a national nonprofit supporting chronic and rare disease young adult patients by providing social and emotional support in the hope of improving their quality of life. Not only is Our Odyssey the 300th member of NORD, but they are also our first Gold-level member organization! 

Starting with the 2020 membership year, NORD is offering a new Gold Membership level for nonprofit, patient advocacy organizations. Our Gold level of Membership is intended for those 501(c)3 tax-exempt organizations that are NOT currently engaged in medical education, research funding, registry coordination, or any work involving a medical advisory board. We created the Gold level of Membership to provide smaller nonprofits in the rare disease community with access to NORD’s community, resources and services. Is your organization interested in this new level membership with NORD? See this page of our website for more information 

Outside of the first Gold level Member Our Odyssey, the remaining 299 NORD member organizations are Platinum level Members, which represents the highest level of integrity and transparency for patient advocacy organizations. Platinum membership is for those patient advocacy groups involved in medical research, drug development, medical education, and/or registries. 

As we mark the start of 2020 by celebrating this milestone, we would also like to reflect on our past year of collaboration and impact in the rare disease community:

  • NORD and our Rare Cancer Coalition hosted the first ever Rare Cancer Day on October 1, 2019, reaching over 100,000 engagements online.
  • NORD hosted two Good Governance Regional Dinners, one full-day Good Governance workshop, and one major, national half-day Leadership training, providing capacity building, networking, and leadership development session to a total of 235 leaders of our Member Organizations.
  • NORD provided $75,000 in complimentary registration access to the World Orphan Drug Congress. 
  • NORD provided $45,000 in travel scholarships to assist 106 rare disease leaders to attend and take full advantage of NORD’s Rare Diseases and Orphan Products Breakthrough Summit. 
  • Through a special relationship with US FDA, NORD hosted eight Listening Sessions. 
  • NORD brought multiple regulatory and government leaders to share their knowledge through special members-only webinars, helping our Members learn how to apply for PCORI funding, engage with FDA, host externally-led Patient-Focused Drug Development meetings, and apply for Department of Defense medical grants.
  • NORD provided complimentary 2019 BoardSource annual membership (valued at up to $3,500 per subscription) to all of our members to help them maximize the effectiveness of their Board of Directors.
  • NORD facilitated unique opportunities for nine members, including tens of thousands of dollars of in-kind donations through pro-bono communication consulting services and connections with the Rochester Institute of Technology IdeaLab to solve complex challenges faced by the rare disease community.

We encourage all patient advocacy organizations to consider joining NORD! Start your decade with the support of NORD and in partnership with the oldest, most trusted umbrella organization of rare disease patient advocacy organizations. To learn more about membership, visit