After suffering severe back pain following a fall down the stairs, UNC senior Charlotte Pete’s mother was taken to the hospital to receive spinal cord surgery. Four weeks into her hospital stay, she was diagnosed with a rare condition that needed to be caught within 48 hours or it would result in permanent nerve damage.
“They didn’t catch it until like four weeks into her stay, even though she was underneath the supervision of doctors and nurses,” Pete said.
After witnessing her mother suffer from permanent damage due to the late diagnosis, Pete decided to start a club at UNC called Students for Rare.
“After learning about the diagnostic delay of rare diseases, it’s motivated me to start the club and just create a space for people with rare diseases to share their stories for future medical professionals and our club,” Pete said.
It often takes years to diagnose rare diseases. She hopes that the club will share with people what the experience of living with a rare disease is like.
The club hosts two guest speakers a month, who share their experiences over a Zoom call with the club members. The guest speakers are either living with a rare disease or have someone close to them with a rare disease. Speakers use the space to share their stories and experiences and offer opportunities for people to ask questions.
Gargi Dixit, a first-year computer science major, said that the stories have given her valuable insight into the day-to-day lives of people who have struggled with rare diseases.
“I think all of these stories have really made an impact on me because they’ve shown me what needs to be done in the field of rare disease to be able to provide great patient care,” Dixit said.
As someone who is looking to go into a career in either health care or medical research, it’s important for her to understand the perspectives of patients and their experiences with different diseases, she said.
Pete said that in addition to having two guest speakers each month, the organization also has a research night where, as a group, they research a disease and make an educational poster to inform the community about the disease.
One of the projects that Students for Rare is currently working on is the Rare Advocate Project. Members are given a chance to submit a video that will be posted on the club’s social media advocating for people with a specific rare disease. In the videos, members usually share how the disease has impacted someone they know or spread general awareness about the disease.
Another project the club is involved in is the RARE Compassion Project. Members are paired with a rare disease patient or a family living with a rare disease and have the opportunity to foster a relationship with these individuals so they can learn about the diagnosis and the experiences and challenges that rare disease patients face.
“One of our guest speakers talked about the need for advocating for yourself to your doctors and about how rare diseases impact low-income families who don’t have access to the internet, so they might not even understand what their rare disease means,” Pete said. “That’s how we see our need is to just advocate as much as we can for those families.”
Schylar Lewis, a senior psychology major, said that the club provides informational resources for patients with rare diseases. These resources provide information on clinical trials, specialists and organizations that will help pay to transport and house rare disease patients who may need to travel for medical procedures or appointments.
Students for Rare is important because it offers awareness of rare diseases along with a place for advocacy for people with rare diseases, Dixit said.
“I think the awareness part is really important because we as students often don’t encounter patients of rare diseases, or even if we do, we don’t often recognize their stories and the obstacles that they have faced,” Dixit said.
In addition, she points out that rare diseases often don’t get much recognition in the field of medicine.
“Students for Rare offers a platform where we can advocate for patients of rare disease and generate awareness about the obstacles that they face,” Dixit said.
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