Rare cancers are those that affect fewer than 40,000 people per year in the U.S. As a group, they make up just over a quarter of all cancers.

In general, there are fewer treatment options for patients with rare cancers because funding for development often lags behind more commercially viable options.

Rare cancers are far more prevalent than the term implies- in fact, more than half of all cancers are classified as “rare”.

Every year 85,900 Adolescents and young adults are diagnosed in the United States.

Despite being the leading cause of death for 15-39-year-olds, over half of AYA cancers have seen no improvement in 5-year survival rates, while children and older adults have seen significant advancements over 30 years.

AYA cancer accounts for more than 6% of all cancer diagnoses each year, 8X as many cases as pediatric cancers and less than 1% of all cancer diagnoses during the same period.

Adolescents and YA have “no medical home” & face barriers at all levels of cancer care & delivery.

It takes an average of 75 days for an AYA to receive a diagnosis. When a diagnosis is delayed, it can result in a cancer that is later-stage and more difficult -to -treat and cure.

Evidence suggests a poor understanding of the biology and etiology of cancers in the young adult population; they have unique genetic & biological features.

Only 5% of 15-39-year-olds see a pediatric specialist, despite the fact that pediatric protocols could improve survival rates. For instance, a tumor may look identical in a child and an adult, yet survival rates differ significantly by age.

There are few guidelines in place specific to AYA cancer care and what does exist varies from program to program.

Cancer patients between 15- and 39 are the least likely to be enrolled in clinical trials, which leads to inadequate collection of patient data.

41% of adolescents and young adults report an unmet counseling need one year after their diagnosis. Research suggests that YAs are 5x more likely to develop PTSD than their healthy peers.

Annual medical expenses for AYA survivors are 2X what a peer without a cancer diagnosis will pay.

Young people ages 15-25 are caught in a medical gray areaThere is a limited focus and there are even fewer resources for the AYA population.

Researchers found that pediatric and adult cancer treatments significantly affect survival rates. A cancer diagnosis doesn’t guarantee fertility benefits, and 50% are never informed treatment could impact fertility.

Follow-up typically ends after 2 years for AYA even though they are at high risk for new & chronic diseases.

A handful of hospitals accommodate Young adults with cancer to their unique psychosocial and supportive care needs.

One in three 15-39-year-old patients will lose insurance coverage due to a transition like job loss.

One in five adolescent and young adult cancer patients have a child under the age of ten.

Most cancers in YA do not have a known cause.

Young adults have limited access to insurance coverage.

Young adults face unique challenges like infertility, relationships, intimacy, insurance, financial aid, career planning, and age-appropriate peer support.