Rare Disease Day: Addressing Disparities in Rare Cancers

Rare Disease Day is observed every year on February 28th or 29th, one of the rarest days of the year. It is a movement organized by EURORDIS and multiple national alliance patient organization partners to create awareness and advance the work on rare disease advocacy. This year’s campaign theme—"More Than You Can Imagine"—highlights patients’ stories and the role that their support system, from loved ones to healthcare professionals and researchers, plays in advocating for equity and access to diagnosis and therapies for rare disease patients.

Often termed “forgotten diseases,” rare diseases are defined as those affecting fewer than 1 in 2,000 people in any World Health Organization (WHO) region. In the context of cancer, certain types are also considered rare and are classified as those with fewer than 15 cases per 100,000 people per year. About 200 cancers, which disproportionately affect certain demographic groups, fall within this classification. Some examples include neuroendocrine tumors, sarcomas, and mesothelioma. As cancer remains a leading cause of death globally, it is important to raise awareness about the realities and outcomes of rare cancer patients, including their struggles, treatment challenges, and opportunities.

One of the foremost challenges faced by rare cancer communities is the lack of resources dedicated to studying their conditions. This issue arises from the low prevalence of rare cancers, incorrect or late diagnoses, lack of funding, reduced implementation science, and limited access to specialized cancer registries and tissue banks. As a result, clinicians often face uncertainty about the best treatment practices for rare cancer patients. Most scientific understanding of rare tumors comes from small-scale studies or anecdotal accounts, which fail to provide comprehensive information about the broader population with similar cancers. So, the development of treatment options and large-scale clinical trials remains limited.

Interestingly, research shows that most epidemiological studies on rare cancers focus on populations in North America, Europe, Australia, Italy, and Japan. However, these regions represent only a small percentage of the global population, highlighting the need to reduce this disparity and expand research to low and middle-income countries like Nepal.

In a study published in The Lancet Regional Health – Southeast Asia identified a severe lack of data on rare cancers in Asia. The establishment of the Rare Cancers Asia initiative in 2018 helped pioneer the collection of data on populations within the Asian region. This program found significant differences between rare cancers prevalent in East Asia and those listed as rare in Europe. To promote global research collaboration and awareness, researchers have been working to identify an accurate list of rare cancers specific to South Asian countries. They found that in Nepal, amongst other Southeast Asian countries, thyroid, colon, bladder, rectal, and prostate cancers have been reported as rare. On the contrary, gallbladder cancer, which is a relatively rare cancer globally with poor outcomes is the 6th most common cancer and the 2nd most common gastrointestinal cancer among Nepalese women. This disparity highlights the differences in rare cancer prevalence between South Asia and the rest of the world.

Rare Disease Day calls on healthcare professionals, researchers, clinicians, policymakers, and the public to raise awareness and take action to support rare disease patients. But how can you make a difference?

One way is to support efforts that drive research and improve patient outcomes. Advocate for increased funding for rare cancer research, encourage diverse participation in clinical trials, and engage with nonprofits and patient support groups dedicated to rare cancers.

Here at Binaytara, we are committed to closing the gap in cancer care through the establishment of cancer care centers, advocacy, research, and education. Currently, we operate a 25-bed cancer hospital in Madhesh Province, southern Nepal, a region that has high cancer mortality rates due to limited access to care. We plan to begin construction on a 200-bed comprehensive cancer center this year.

Similarly, to increase awareness and drive advancement in cancer care and research, our annual event, the Summit on Cancer Health Disparities 2025 (SCHD25), will bring together experts to discuss critical topics related to rare cancers. Key discussions will include “Barriers and Facilitators to Clinical Trial Diversity” and “Engagement with Cancer Survivors and Communities at Risk.”

Rare Disease Day reminds us that not all cancer patients have the same access to state-of-the-art care, treatment, or cutting-edge research—and that needs to change. Addressing cancer disparities means ensuring that everyone, regardless of race, income, or where they live, has a fair chance at early detection, effective treatment, and survival. This Rare Disease Day, consider supporting organizations dedicated to closing the gap in cancer care and bringing life-saving resources to underserved populations.

If you are a rare cancer patient or survivor, we would love to hear your story. Together we can build a more equitable future for all cancer patients. Join us in making a difference.

Works Discussed

1. Rare Disease Day. (2024). Rare Disease Day. Retrieved from https://www.rarediseaseday.org/
2. The Lancet Global Health. (2024). The landscape for rare diseases in 2024. The Lancet Global Health, 12(3), e341.
3. Vivekanandhan, S., Bahr, D., Kothari, A., Ashary, M. A., Baksh, M., & Gabriel, E. (2023). Immunotherapies in rare cancers. Molecular Cancer, 22(1), 23.
4. Pillai, R. K., & Jayasree, K. (2017). Rare cancers: Challenges & issues. Indian Journal of Medical Research, 145(1), 17–27.
5. Mailankody, S., Bajpai, J., Budukh, A., Swaminathan, R., Dikshit, R., Dhimal, M., Perera, S., Tshomo, U., Bagal, S., Bhise, M., Chaturvedi, P., Banavali, S. D., Gupta, S., Badwe, R. A., & Trama, A. (2023). Epidemiology of rare cancers in India and South Asian countries - remembering the forgotten. The Lancet Regional Health - Southeast Asia, 12, 100168.