The University of Rhode Island’s student chapter of the National Organization for Rare Disorders is looking to boost campus awareness by ‘sharing their stripes’ to build a deeper education of rare diseases on campus.
Founded in February by first-year neuroscience major Lauren Junge, the club aims to bring awareness to all diseases, according to Junge. This includes Lambert-Eaton Myasthenic Syndrome, a rare autoimmune disorder that she is diagnosed with.
In the medical field doctors are often told to consider the common conditions or ‘horses’ first, however sometimes you end up with a zebra or rare disease, according to Junge. The zebra is the organization’s mascot.
Before the club’s creation, Junge said she didn’t notice much campus support for people with rare diseases, something she believes is important for an inclusive campus community.
“There’s people on campus with rare diseases, and I wanted it to be a community for them,” Junge said. “[NORD] can be a community for people that don’t have rare diseases; it’s just a community for people to share.”
The club’s first meeting was on Feb. 28, which is also National Rare Disease Day.
Most of the URI branch of NORD doesn’t have rare diseases and is made up of students who want to build a better understanding of something they may not know much about, according to Junge.
The club allows neuroscience majors, including Caroline Nuzum, first-year URI NORD treasurer, to gain useful experience going into the workforce as well.
“[NORD] is a really good opportunity for people who are in the sciences or in health related fields,” Nuzum said. “It’s a really great thing to know if you’re planning on going into that, because it just gives you another level of understanding and awareness as a professional.”
The educational factors played a large role in her interest in joining the club, according to Nuzum.
“As someone who has no experience in this, but would like to have more knowledge about it, going into healthcare, this is a great club,” Nuzum said.
Third-year marine biology and animal science major Isabella Soto joined the NORD electoral board for similar reasons.
As someone with friends who have rare diseases and who has worked as a coach for people with rare diseases, NORD strongly aligned with both her personal values and education, according to Soto.
“Working with people is a big part of learning also how to be empathetic and compassionate towards people [with] diseases,” Soto said. “There’s a public health aspect that works with animal science and veterinary medicine, where certain diseases are zoonotic. ”
Through the club, NORD provides a 20 hour educational course where students are able to expand their knowledge on working with people with rare diseases, according to Sota.
The “educational aspect” and learning the club provides is her favorite part of NORD, Sota said.
In the future NORD is looking forward to partnering with sororities, clubs and organizations on campus, especially the Women’s Center, according to Junge. The club plans to set up a booth at the upcoming welcome day on April 12.
NORD hopes to stand as a voice for the community, and wants people to know they are here, according to first-year Vice President Sofia Payne.
“It’s really important that, when people are deciding where they want to go to school, that they can see that there’s a community for them,” Payne said. “It’s important to have representation.”
The next NORD meeting takes place in Memorial Union Room 208 on April 25 from 6-7 p.m.
