Friday, February 28, 2026 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
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:
- Share your patient/survivor story
- Like and share our content on social media to spread the word
- Create a Facebook or Instagram fundraiser
- Make a direct gift to support ACPMP
Patient Stories in Honor of Rare Disease Day:
Appendix Cancer Patient Story (Updated Nov 2025): John Majewski
John, Mary, and Grandson, James
“When my cancer journey was revealed, I was still 59. With the extent of the disease, it appeared I may not reach 61. Well, today is my 68th birthday. Wow! Here’s an update on what happened since my story was posted this past April. It certainly remains a journey of faith and an emotional roller coaster ride.
After multiple anticipated start dates, I continue to await the phase 3 trial that has shown positive results with similar cancers that have not responded well to chemotherapy or immunotherapy. Through the generosity of donors, this trial would focus on appendix cancer patients like me.
We had to try something to slow disease progression. The standard of care hadn’t been working, so in May, we started Lonsurf +Avastin as a 6th course of chemo. After two cycles, I developed a severe case of bronchitis that was difficult to treat. We stopped treatments and resumed waiting. The upside was that I was able to enjoy some family summer vacations. We need these precious moments.
In July came word that the FDA had approved the trial. Just in time, I thought. As disease progression continued, I began experiencing more consistent and stronger pain. My CEA and CA19-9 markers started climbing fast. Then we faced more delays. After the activation phase, the challenges became contractual and outside of our control. These are things I never anticipated, but they are a reality and something we must deal with. Fortunately, I checked my jar of patience – it was still full!
Initially, oxycodone and then extended-release morphine helped to reduce pain. Fresh scans and blood tests indicated we had to act soon. Apparently, retreats with Folfox after 5 years had shown positive responses in stalling progression. I haven’t had Folfox since early 2018, so we are giving it a try. It’s only my second cycle, and too early to tell if it’s working. If it appears to help, the plan is to continue until the trial opens.
Our story remains one of blessings, hope, and gratitude. Our resolve is firm. We will keep you posted.”
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.