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 Goal
To eliminate the challenges faced by people affected by rare cancers through:
- Global awareness through campaigns such as #RareCancerDay, and representation at major events
- Publications and medical education
- Patient and caregiver education
- Collaborative networking and peer-to-peer mentoring
- Capacity building for Rare Cancer Patient Advocacy Groups
Contact Us to learn more about the Rare Cancer Coalition and how your organization can get involved!
Rare Cancer Coalition Members
Accomplishments
The Rare Cancer Coalition works to advance awareness, research, education, and advocacy for people affected by rare cancers. Since its launch in 2018, the coalition has built partnerships across government, academia, industry, and patient advocacy organizations to improve outcomes for rare cancer patients.
- Awareness: Led the creation of Rare Cancer Day in 2019 to bring awareness to rare cancers and the issues people living with them face.
- Advocacy: Championed rare cancer policy priorities through engagement with federal partners, including annual support for congressional recognition of Rare Cancer Day, and collaboration with agencies such as the FDA, NIH, and Department of Defense.
- Education: Expanded educational opportunities for healthcare professionals, patients, and caregivers through continuing medical education programs, webinars, conference programming, and resources focused on rare cancers.
- Research: Fostered partnerships with leading research institutions and government agencies to support rare cancer research, increase awareness of funding opportunities, and accelerate progress toward better treatments and outcomes.
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 23rd.
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.
Share Your Rare Cancer Story
Every rare cancer journey is unique, and every story has the power to make a difference. The Rare Cancer Coalition invites patients and caregivers to share their experiences living with or caring for someone affected by a rare cancer.
By sharing your story, you can help raise awareness, foster understanding, and advocate for earlier diagnosis, improved support, and better outcomes for the rare cancer community.
Complete our Share Your Story form and select “Rare Cancer Day” from the Campaign Interests dropdown menu.
Rare Cancer Consortium Partners:
Rare Cancer Coalition Champions:
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)
Continuing Medical Education
NORD and Platform Q health are proud to feature ongoing courses about Rare Cancers as an important part of our CME offerings. These courses are available for credit for one year following their publication.
Click here to check out some of the past and present CME sessions on Rare Cancer.
