The U.S.
Rare Cancer Landscape:
A 2023 Report

Download The U.S. Rare Cancer Landscape: A 2023 Report at jedicancerfoundation.org/landscape-study

Prior to a national rare cancer workshop the Jedi Rare Cancer Foundation convened at the Case Comprehensive Cancer Center in November 2023, the Jedi Rare Cancer Foundation commissioned a landscape study and report to explore the state of research and discovery for rare cancer in the United States.

Approximately one in four of the 1.9 million people in the United States who had or will receive a new cancer diagnosis in 2023 will have a ‘rare cancer,’ defined as an incidence of fewer than six cases per 100,000 people per year. The bottom line is that for most of these rare cancers, no protocol for treatment or a cure exists. While there continues to be obstacles, new technology and science models make it possible to envision a path forward.

Aims of The U.S. Rare Cancer Landscape Study:

• To learn why progress in developing therapeutics for rare cancer has not kept pace with advances in treating the more common cancers.

• To determine what is currently being done to address this need and what would be required to expand upon and integrate these efforts.

• To integrate the information discussed into a comprehensive systemic approach to improve outcomes for every person diagnosed with a rare cancer.

The U.S. Rare Cancer Landscape: A 2023 Report contains qualitative data obtained from experts with specialized relevant knowledge to inform this inquiry, answer questions, and pose new ones. These

individuals represent multiple organizations, multiple diseases, and multiple points of view with insights gained from real-world medical science experience in the rare cancer space.

The report also identifies a chain of issues related to rare cancer, including insufficient numbers of patients at any single location, difficulty enrolling enough patients in clinical trials, and a lack of localized biospecimens. These issues slow down data collection and research, leading to a lag in the development of therapeutics to treat rare cancer.

Findings suggest a more holistic, interconnected approach encompassing rare cancer research, public policy, education, and advocacy is required. It breaks down the factors discussed into four broad categories: Research; Biospecimens and Data; Patient-Centered Pathways; and Funding, Management, and Government.

Highlighted within the report is the need for a consensus on what defines a cancer as rare; it finds that the field of oncology is moving away from classifying cancers by site of origin in the body to delineating tumor types based on molecular aberrations, vulnerabilities, and drivers.

The report concludes by emphasizing the importance of multi-year funding commitments for basic research for rare cancer and the need for institutional leadership to support and participate in pioneering projects. It also highlights the potential of drug repurposing and the need for innovative research models. 

Download The U.S. Rare Cancer Landscape: A 2023 Report at jedicancerfoundation.org/landscape-study