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Rare Cancer Coalition

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 35 years of experience 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 jim@targetcancerfoundation.org and John Hopper, President of the Fibrolamellar Cancer Foundation, at jhopper@fibrofoundation.org or email membership@rarediseases.org.

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.

Rare Cancer Coalition Members