The problem

Rare Cancer Patients Are Left To Die

About 30 percent of people with cancer have a rare cancer.
Rare cancers include brain, cervical, esophageal, sarcomas, all types of pediatric cancers, and many others. Of 398 identified forms of cancer, at least 374 are RARE according to criteria published by the American Cancer Society.

  • 1.7 million people are diagnosed with cancer every year in the United States alone. Approximately 30% of those are rare cancers. That’s 500,000+ people diagnosed with a rare cancer every single year.

  • In 2017, 83% of all new cancer patients who lacked an FDA-approved targeted therapy were rare cancer patients. In reality, that number is under counted due to multiple exclusion criteria for access and inconsistencies in availability and usage.

Why are there so few therapies?


    Cancer isn’t one disease, it’s many.


    Each cancer requires its own deep understanding, specific therapeutic, and set of clinical trials.


    Money given to cancer research goes to the most common and well-known orms (breast, lung, skin).


    The 374 “rare cancers” that account for almost 30% of all diagnoses are often unheard-of and overlooked.


    Research isn’t medicine.


    Every specific therapeutic has to be developed for every different type
    of cancer.


    Return on investment drives decisions.


    Fewer patients = smaller profits – Rare cancers don’t make tens of billions of dollars for pharmaceutical companies.

We believe millions of people
who could be saved
should not be left to die.