The Student-led Rare Cancer and Health Disparity Coalition partnered with North Carolina Central University to host a tabling event on Bryan Center Plaza Tuesday in honor of Rare Disease Day.
Rare Disease Day began in 2008 and is hosted annually on Feb. 28, or Feb. 29 during leap years. It was created by an international coalition of health organizations to encourage advocacy around diagnosis, treatment and research on rare diseases.
The SRCHDC officially formed in fall 2022 after an awareness event in March 2022. It is an offshoot of Professor in Surgery Gayathri Devi’s lab, which studies inflammatory breast cancer.
“Rare Disease Day is particularly important to us because there are a lot of diseases and rare cancers that aren’t discussed and it’s intrinsically linked to healthcare disparities,” senior and SRCHDC president Alexandra Bennion said.
These disparities take a variety of forms. People with rare diseases often face higher health care costs than people without rare diseases. And while rare disease patients may face a lack of knowledge about their disease and delayed diagnosis regardless of their background, those challenges are compounded for people of color, who are underrepresented in clinical trials and genomic studies.
“Duke is the perfect place to have an advocacy club with undergraduates, [graduate students], community members and NCCU,” Bennion said. “Many students are going into healthcare disciplines, and if they’re not, maybe they know somebody who has been affected by cancer and perhaps want to engage in advocacy, patient support research or awareness.”
At 11 a.m. the group was anticipating a lunchtime rush. The group offered Krispy Kreme donuts to students as they explained the club’s mission — connecting students with researchers and advocates for rare diseases and increasing awareness.
Thirty minutes later, a crowd of students passed a clipboard around to sign up for more information. Students who stopped by talked about their interests in medicine, research and biology.
Special Dover, a student at NCCU, tabled with the SRCHDC. She connected with the club through Kevin Williams, the Merck professor in integrated biosciences at NCCU and associate member of the Duke Cancer Institute.
“I wanted to work with something in cancer or Alzheimer’s disease because those are two things I’m very passionate about, mainly because of personal experiences that I’ve had with family members that went through and that are still going through these types of diseases,” Dover said.
Dover said that NCCU students may not be aware of the opportunities that are available to them and emphasized the importance of connecting with professors and the value of the Bridge Office. She emphasized that if other universities continue reaching out to NCCU “then students will see that these opportunities are for them.”
Bennion said that Duke and NCCU are both part of “the same big Durham community,” and that the group hopes to make space for the voices of NCCU students.
The University’s work in rare diseases goes beyond the Devi lab and the SRCHDC.
Duke Health Rare Disease Center, based in the Medical Genetics division of the department of pediatrics, was designated a Rare Disease Center of Excellence by the National Organization for Rare Diseases in 2021.
Researchers from that division were instrumental in the development of a treatment for infantile-onset Pompe disease, a rare disease that is often fatal. Duke is also part of the Undiagnosed Diseases Network, focusing on conditions that have not been identified yet.
Sophomore Kate Reddy wrote that the event was “extremely valuable” to the SRCHDC’s goals. “It was amazing to see so many students, faculty, and community members from both Duke and NCCU come together to support these important causes,” she wrote.
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Nadia Bey, Trinity '23, was managing editor for The Chronicle's 117th volume and digital strategy director for Volume 118.