Rare Disease Day 2025

Friday, February 28, 2025 will once again mark Rare Disease Day, a global campaign celebrated on the last day of February each year (the rarest day on the calendar) to raise awareness about the more than 7,000 rare diseases – including appendix cancer and pseudomyxoma peritonei (PMP).

  • A rare disease is considered to be a disease that affects fewer than 200,000 people in the US at any given time.
  • More than 90% of rare diseases are still without an FDA-approved treatment.
  • There are more than 500 rare cancers.
  • Appendix cancer affects approximately 2-9 people per million.¹
  • There are approximately 3,000 new cases of appendix cancer per year in the United States. The number of cases has been increasing recently, particularly in patients under age 50.²
  • The zebra is the symbol of rare diseases. Why? See below!³

We will be sharing appendix cancer patient stories and facts on our social accounts. We hope you’ll join us in uplifting and amplifying these brave patients’ stories by sharing and engaging with our posts.

In honor of Rare Disease Day, submit your story to us to be featured in a future ACPMP awareness post or campaign. Your stories and faces help explain the impact of this rare disease, raise awareness, and highlight the need for research and education.

Learn more about celebrating Rare Disease Day in the U.S. and around the world.

Ways to support ACPMP for Rare Disease Day:

Patient & Caregiver Stories in Honor of Rare Disease Day:

Appendix Cancer Caregiver Story: Hazel Skarbek-Tyler

“My dad was one of approximately 3,000 people a year diagnosed with appendix cancer. At first, I thought, ‘small, pointless organ cancer’—but four years, multiple surgeries, and rounds of chemo later, we know it’s anything but.”

Hazel’s journey as a daughter and caregiver to her father has been one of love, resilience, and advocacy. Through her experience, she’s learned that appendix cancer is more than just a rare disease—it’s a fight that deserves awareness, understanding, and progress.

#AppendixCancer spreads differently than many cancers, requiring specialized treatment. Yet, it remains one of the lesser-known cancers, often misunderstood. Today, on #RareDiseaseDay, we share Hazel’s story in honor of her father and the thousands impacted by this rare disease.

Feb 28th, Rare Disease Day, is also Hazel’s 28th birthday!  What are the odds? Just another little reminder of how life’s coincidences can bring deeper meaning.

Read Hazel’s Full Story.

 

Appendix Cancer Patient Story: Melissa Fedigan

 

¹Learn more about appendix cancer and pseudomyxoma peritonei on our About Appendix Cancer page.

²  Statistic from MD Anderson Cancer Center

³“When you hear the sound of hooves, think horses, not zebras.” This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used to reference a rare disease or condition. Medical professionals are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions, but many medical professionals seem to forget that “zebras” DO exist. Therefore, receiving a diagnosis and treatment can be more difficult for those with rare conditions.