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Why Rare Cancer Day Matters to Us

Writer: Hailey Larson
Hailey Larson
Sep 24
3 min read

Every year on September 24, the global medical community observes World Cancer Research Day. It’s a day dedicated to celebrating scientific breakthroughs, clinical trials, and the incredible researchers working to find a cure.


But if you look at where the majority of global research funding goes, it naturally flows toward the most common diagnoses—like breast, lung, and prostate cancers. This leaves an entire community of patients navigating uncharted territory.


That is why, just six days later, on September 30, the world marks Rare Cancer Day.

At The Horse of Many Colors, this specific bridge between research and rare diagnoses is our core niche. We exist because we believe that no matter how rare your diagnosis is, you deserve a community that knows your name and stands in your corner.


The Reality of a "Rare" Diagnosis

In the United States, a disease is officially classified as "rare" if it affects fewer than 200,000 people at any given time. Individually, these cancers—such as appendix cancer, sarcoma, Merkel cell carcinoma, or gallbladder cancer—seem uncommon.


But when you add them all together, the numbers are staggering:

  • 1 in 5: Approximately 20% of all people diagnosed with cancer each year are fighting a rare form of the disease.

  • The Pediatric Connection: Tragically, nearly all childhood cancers fall into the rare category.

  • The Data Gap: Because these individual patient populations are small, pharmaceutical companies and research institutions often struggle to fund, design, and complete clinical trials for them.


When you are diagnosed with a common cancer, there is usually a well-worn, standardized treatment playbook. When you are diagnosed with a rare cancer, that playbook might not even exist yet. Patients and their families are often left dealing with misdiagnoses, limited treatment options, and the profound isolation of feeling like they are entirely on their own.


Connecting Global Research to Local Grants

This is where the mission of The Horse of Many Colors comes to life. While brilliant scientists work to close the data gap on World Cancer Research Day, our foundation focuses on closing the financial and emotional gap for families right here in our valley.

We deliberately chose a name that represents all cancers. Whether a patient is fighting a widely recognized disease or a rare condition that their own local doctor has rarely seen, they qualify for our direct grant program.


When a diagnosis is rare, the burdens are often amplified:

  • Travel Expenses: Specialists for rare cancers are rarely local. Families frequently have to travel across state lines to specialized research hospitals, multiplying travel, lodging, and gas costs.

  • Insurance Hurdles: Because treatments for rare cancers can be experimental or "off-label," getting insurance approval can turn into a bureaucratic nightmare, leading to immediate financial strain.


Our community-powered care model steps in precisely where the rest of the system lags. By picking up the tab for everyday expenses, we ensure that a family facing a rare diagnosis can afford the travel, the consultations, and the specialized care they desperately need.


You Are Not Rare to Us

Rare Cancer Day isn't just about statistics; it's about dignity. It’s about looking at the 20% of cancer patients who feel completely invisible and saying: We see you. Your fight matters.

As September draws to a close, let’s carry the spirit of both research and rare advocacy forward. Thank you for linking arms with us to make sure that in our community, no diagnosis is ever too rare to care about.

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