Rare Cancer Coalition: Fighting Rare Cancers

The Rare Cancer Coalition, formalized in 2017 as a program under the NORD Membership umbrella, unites advocacy organizations working in rare cancers to collaborate on issues facing their communities.

Our Goals

To eliminate the challenges faced by people affected by rare cancers through:

  • Publications and medical education
  • Patient and caregiver education
  • Global awareness through campaigns such as #RareCancerDay
  • Representation at major conferences and events
  • Collaborative networking, peer-to-peer mentoring, and capacity building

Click here to read our accomplishments or contact us to learn more.

Rare Cancer Day

Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Rare Cancer Day is celebrated on September 30th.

Click here to learn more about Rare Cancer Day

Facts & Figures

  • The 5-year survival rate is lower for people living with a rare cancer than those diagnosed with a more common cancer.
  • Approximately 1 in 4 Americans living with cancer are diagnosed with a rare cancer.
  • The Coalition is composed of NORD Member Organizations supporting rare cancer patients. To join, learn more about NORD membership.

Rare Cancer Coalition® Members

Acureinsight ocular melanoma 1Rcc aa mds logoRcc ac pmp logoRcc children tumor foundation logo2018 logoChondrosarcoma logo webClear cell sarcoma foundation logoRcc cutaneous lymphoma logoRcc fcf logoRcc gorlin logoThe healing net foundation logo hnf logo 1Histiocytosis associationRcc inca logoIwmf logo full cmyk july 2020Rcc lfsa logoRcc mpn logoNlmsf logoRcc net logoOcular melanoma foundationRcc pten logoRcc rcrf logoRcc target cancer logoTbrs community logo 1 2Dtrf fullcolorThe ehe foundation logo ehe ribbon logo 6 1 red with yellow scaledRcc life raft logoPheopara horizontal fullcolor webRcc vhl logo

The Rare Cancer Coalition under NORD has a special Memorandum Of Understanding (MOU) partnership between the Center For Cancer Research, National Cancer Institute, concerning their Rare Tumor Patient Engagement Network (RTPEN)