Why is it called rare cancer when it’s not rare?
What is tragically obvious to rare cancer researchers, medical scientists, hospitals, and doctors is widely unknown by the public until they or a loved one is diagnosed with a rare cancer.
Rare cancers are not rare.
Rare cancers are 25% of cancers diagnosed annually and comprise a staggering 198 varieties, states the British Journal of Cancer article “Rare Cancers: the greatest inequality in cancer research and oncology treatment.” Over 200,000 patients are diagnosed with a rare cancer each year in the U.S. alone and these patients have little hope of a positive outcome.
A rare cancer diagnosis is most often a death sentence.
Jed died 6 months after his initial diagnosis; the 5-year survival rate for rare cancer patients is much lower than common cancers, resulting in a disproportionate number of all cancer deaths.
Rare cancer patients have little to no treatment options.
The diagnosis and treatment of rare cancers is challenging and oncologists who manage these patients find it difficult to access bona fide experts with meaningful treatment input. The development of clinical trials in rare cancers in both early and advanced disease settings has been a major challenge.
Rare cancer research is critically underfunded.
When looking at overall expenditure allocations in cancer research by leading research funding agencies, cancer experts generally agree that funding is primarily focused on the prevalent “common” cancer forms, and fails to sufficiently fund rare cancer research.
More investment in rare cancer research is the only solution.
That is the mission of this foundation. Innovative science is the only way rare cancer detection and treatment will improve. The foundations’ philanthropy is laser focused to advocate for and empower investigators, physicians and cancer research institutions’ rare cancer efforts.
Rare cancer patients and researchers need our help.
Eliminating the heartbreak that patients and their families endure compelled Mark and Linda to establish this foundation that funds research that accelerates scientific discoveries that lead to better outcomes.