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Rare Cancer Coalition

Please contact [email protected] to include your organization in #RareCancerDay activities.

Created in 2017, NORD’s Rare Cancer Coalition (RCC) aims to unite NORD member organizations working in rare cancers to collaborate on issues facing the greater rare cancer community. The coalition strengthens its individual members through capacity building, networking and peer-to-peer mentoring.

With more than three decades as an umbrella organization in the rare disease space, NORD provides our coalition members with a proven support system and an unmatched depth of resources to advance the fight against rare cancers efficiently and effectively.

FOR MORE INFORMATION CONTACT RCC CO-CHAIRS: Jim Palma, Executive Director of the TargetCancer Foundation, at [email protected] and John Hopper, President of the Fibrolamellar Cancer Foundation, at [email protected] or email [email protected].

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Accomplishments

2016:

  • NORD hosts first “Rare Cancer Roundtable” at NORD’s Rare Diseases and Orphan Products Breakthrough Summit (Summit) bringing together 15 leaders, advocates and stakeholders.

2017

  • Rare cancer is featured at two roundtables at NORD’s Summit drawing over 50 attendees.

2018

  • Rare Cancer Coalition is officially launched as a program under NORD’S Membership Committee NORD’s Rare Cancer Coalition debuts first formal panel workshop at the Summit featuring stakeholders across foundations, industry, government and research institutions.
  • Coalition establishes major presence exhibiting at the American Society for Clinical Oncology (ASCO) RCC members had the opportunity to interact and gain visibility among the 38,000 oncologists and key stakeholders in attendance. The RCC will return to ASCO in 2019.
  • Department of Defense announces rare cancers as new funding area.
  • Rare Cancer Coalition comprises 21 of NORD’s member organizations dedicated to 57 rare cancers.

2019

  • DOD Research Funding: NORD launches collaboration with the Department of Defense Peer Reviewed Cancer Research Program (PRCRP) under the Congressionally Directed Medical Research Programs.
  • NIH Collaborations: For the first time, a panel dedicated to rare cancers was held at the National Institutes of Health Rare Disease Day, with RCC executive leadership speaking on the panel to an audience of over 2,000 in-person and on live-stream.
  • Global Drug Development: For the first time at the World Orphan Drug Congress – USA, an entire track at this conference was dedicated to rare cancers. RCC executive leadership and coalition member organizations served on multiple panels.
  • International Presence: RCC expands its presence internationally as executive leadership leads a panel and workshop around the benefits of building a coalition in rare cancers.
  • Global Awareness: NORD’s Rare Cancer Coalition launches a day devoted to raising awareness about rare cancers. #RareCancerDay is observed on September 30 to highlight the challenges people living with rare cancers face and to unify individuals living with rare cancers for awareness and early diagnosis. More info.

2020:

  • A Seat at the Department of Defense: The coalition secured representation at a special stakeholder meeting of the Department of Defense (DOD) regarding its Congressional-Directed Medical Research Program which works to determine the direction of new research funding for rare cancers.
  • Global Education and Awareness: The Coalition announced its second annual Rare Cancer Day, with a theme highlighting the value of genomic testing in helping patients find targeted therapies. The coalition unified the voices of the rare cancer community around the world with thousands of engagements, nearly 150,000 impressions across NORD’s social media platforms and a potential reach of 2.7 million with the #RareCancerDay.
  • National Recognition from FDA: In October, during the NORD Rare Disease and Orphan Products Breakthrough Summit, then-FDA Commissioner Stephen Hahn recognized the Rare Cancer Coalition and our Listening Session with the FDA Oncology Centers of Excellence in his keynote address at the NORD Summit.
  • Health Care Provider Education: Members of the Rare Cancer Coalition contributed to a Rare Cancer Congress, consisting of four CME sessions on rare blood disorders and five CME sessions on rare solid tumors. To date 780 health care providers have participated in the education. Sessions are available online through October and November of 2021.
  • COVID19 Listening Session with FDA: The coalition collaborated with the Oncology Center of Excellence (OCE) at the US Food and Drug Administration (FDA) on a new initiative to exchange information regarding how COVID-19 has impacted rare cancer drug development, and the ways in which FDA and the entire stakeholder community are working to address the challenges that are emerging, particularly with respect to the conduct of clinical trials in rare oncology.
  • Outreach to the Medical Community: NORD partnered with Frontline Medical Communications (FMC), a division of Medscape, on Rare Diseases Report: Cancers, published in late 2020. The goal of this publication is to promote awareness of rare diseases, current research and state-of-the-art treatments among physicians and other medical professionals. The Rare Disease Report: Cancers featured articles about recent NORD research to document the impact of COVID-19 on the rare disease community. Editors interviewed rare disease medical experts in oncology from Dana-Farber Cancer Institute, Harvard Medical School, University of California at San Diego and Moores Cancer Center.
  • Patient and Caregiver Education: In the fall of 2020, the coalition hosted an educational webinar on genomic testing and personalized care featuring a genetic counselor from Dana Farber and the Branch Clinical Director of Pediatric Oncology at NIH. Along with patient advocate speakers and coalition leadership, they spoke on the utility of these diagnostic tools in treatment of rare cancers.

Rare Cancer Coalition Members