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

Ocular melanoma awareness campaign image.Rare disease community logo image.Rare cancer coalition logo image.Children's tumor foundation logo image.2018 logo for rare diseases organizationChondrosarcoma-logo-webClear cell sarcoma foundation logo.Rcc cutaneous lymphoma logo imageDtrf fullcolor logo on website pageEhe foundation ribbon logo in redLogo of red cross foundation."logo for gorlin syndrome research foundation"Healing net foundation logo image.Histiocytosis-associationColorful logo of the rcc inca.Iwmf-logo-full-cmyk -july-2020Logo of the renal cell carcinoma."life raft logo on blue background"Red and blue swirl logo design.Nlmsf-logoLogo of a red ribbon.Ocular melanoma foundation logo on displayPheopara organization logo in full colorColorful logo featuring letters r, c, c, and pten."logo for target cancer foundation"Tbrs community logo imageLogo of the vhl alliance organization.

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)