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Although rare cancers represent 27% of all cancer cases worldwide, rare cancers are understudied and less known (NIH). Because many rare cancers are first detected by primary care providers and patients, it is imperative to understand their experiences in order to facilitate early diagnosis and effective treatment of these rare conditions. Our survey instruments use Inflammatory Breast Cancer (IBC), a rare but lethal form of cancer not easily detectable by mammogram, as a focal point for proof-of-concept. The instruments are designed to be adaptable to other rare cancers and health disparities,
The Duke Student-led Rare Cancer and Health Disparity Coalition aims to form a lasting connection among Duke, NCCU, the Durham community, and beyond, bridging the gap between the research lab, the clinic, and the community. The Coalition hopes to provide students and community members affected by rare cancers (themselves or through family and beyond), and those interested in rare cancers a platform to engage in rare cancer advocacy, research, and science communication work. Specific to students, this coalition will prepare students to advocate for rare cancer – whether it be through research, medicine, business, and other professional communities – throughout their undergraduate/graduate career and beyond.
Planned Activities
- Hosting a rare disease experience panel (inviting patients and patient advocates to share their stories and experiences with rare diseases).
- Hosting a researcher/medical provider panel on approaching rare disease research, how to get involved in rare disease research, the importance of understanding disparities in rare diseases, etc.
- Creation of Duke and NCCU Rare Disease Researcher Directory for student contact and collaboration.
- Training sessions by patients and patient advocates for students to become community advocates for rare cancers.
- Collaboration with Awareness of Rare Cancers (ARC) events.
- Semester General Body Meetings for members to connect and discuss issues relating to rare cancers.
- Awareness events, such as tabling for Rare Disease Day.
- Medical student affinity group involvement.
- Interdisciplinary student involvement
