Each year on February 28, Rare Disease Day shines a spotlight on the 300 million people worldwide diagnosed with a rare disease–among them are rare cancers, which remain one of the most overlooked and underfunded areas of oncology despite making up a significant portion of cancer diagnoses worldwide. Rare cancers affect approximately 400,000 Americans annually and present unique challenges for researchers, clinicians, and patients alike. The rarity of these diseases means that funding is scarce, clinical trials are difficult to organize, and treatment options are limited.

In honor of Rare Disease Day 2025, the Trends in Cancer journal published a series of new interviews with experts in the field of rare cancer research, including the Alliance for Rare Cancers (ARC) Board Member Dr. Jesse S. Boehm. He has been at the forefront of efforts to address the systemic barriers that have long hindered advancements in rare cancer therapies.

“A mismatch between the level of investment needed and the scale of the challenge is clear.” – Dr. Jesse S. Boehm, ARC Board Member

Dr. Boehm emphasized that rare cancer patients have been left behind in the fight against cancer, and this is unacceptable. Even more so because there’s no scientific barrier to studying rare cancers. This disparity exists because patients are geographically dispersed, so it’s hard to study a group. Additionally, there’s a lack of patients, resources, and researchers at any one institution, leading to a lack of clarity about cellular targets to hit when developing therapies. On top of that, the investment needed simply doesn’t meet the challenge of this scale.

This needs to change ASAP: the 5-year overall survival rate for rare cancers is only 49%, significantly lower than the 63% for more familiar cancer types, such as lung cancer or skin cancer. What’s even more heartbreaking is that a recent study showed North American children under age 5 had the highest percentage of rare cancers. However, a new day is coming for the fight against rare cancers.

“The Alliance for Rare Cancers has galvanized an unprecedented coalition of stakeholders.” – Dr. Jesse S. Boehm, ARC Board Member

The Jedi Rare Cancer Foundation brought together the leading experts in the fight against rare cancers, launching ARC and combining medical communities and capabilities to enable better care and treatments, ensuring rare cancers no longer have the last word. Dr. Boehm is a member of the ARC team, which will work together to implement a coordinated national rare cancer plan for the USA and beyond.

Dr. Boehm foresees the ARC group will merge new technologies, such as organoid culture, genome engineering and machine learning, patient-partnered platforms for data and living tissue donation, and social media-driven patient communities, which will enable any researcher to hunt for rare cancer drug targets. Continuing this conversation, Dr. Boehm shared more about rare cancer innovations like these at The Boston Globe Rare Disease Summit.

Stand With Rare Cancer Patients: Support Research Today

The Jedi Rare Cancer Foundation supports scientific research, advocacy, and community engagement to make a lasting impact in rare cancer research. Our Alliance for Rare Cancers is an unprecedented national alliance of 35 rare cancer-focused academic leaders, regulatory experts, foundations, and patient advocacy groups collaborating to make data-driven approaches in rare cancer a reality. 
Support our fight to save more lives affected by rare cancer and donate today.