Green, blue, pink and purple lights illuminated the walls of Hesburgh Library to commemorate Rare Disease Day in the Notre Dame community on Friday, Feb. 28.
The month of February marks the official observance of Rare Disease Month, a time for individuals to honor patients with rare diseases and raise awareness. This year, Notre Dame continued its tradition of lighting up Hesburgh Library with the official rare disease colors while also organizing other activities to commemorate Rare Disease Day.
Events were led by Katrina Conrad, program manager for the Patient Advocacy Initiative, and Barbara Calhoun, director of the Patient Advocacy Initiative. The two work as a team to plan outpatient facing programs and began Rare Disease Day event planning almost six months ago.
Although some parts of Notre Dame's Rare Disease Day have remained the same, such as illuminating Hesburgh Library’s outer lights, Conrad and Calhoun also implemented changes, such as an increase in the involvement of students in the science and patient advocacy minor and the general community.
“We have over 30 students that signed up to volunteer in some way or another, whether it be by doing luminaries, doing Grotto prayer requests or helping to run activity stations tonight,” Conrad said. “In addition to students in the minor, we’re also excited to be joined by RareND this year, as well as the Make A Wish club on campus.”
Conrad continued, “We had some additional support from Uplifting Athletes … they had a bunch of their teammates sign footballs in advance for the families, and then several members of the cheer team will also be stopping by.”
Aside from an increase in student involvement, Conrad and Calhoun also noted an increase in attendance of families experiencing rare disease at the event.
“Last year, we had seven families registered, and then this year, it’s 20,” Calhoun said. “Getting the community involved on campus is really what we’re working towards, so that we can let [the families] know that we’re here and that they’re available to come whenever they want and with whomever they want.”
Calhoun elaborated, “The biggest thing about rare disease patients is they are often marginalized in terms of the care that they receive ... they have to travel such distances to see experts that understand their disease, and there are just so many complexities that I think [are] overwhelming and isolating. For these types of events that we have, we want them to come, and we want them to [know that] it’s their day.”
With an increase in both student and general community attendance, the Rare Disease Day event also had a few other additions in terms of programming. Different from prior years, this year’s event featured two student remarks delivered by junior Tim Theisen, a student in the science and patient advocacy minor, and junior Annie Hamilton, a student with Friedreich’s ataxia. In addition to reflective prayers and verbal remarks, dinner was held for the families in Jordan Hall, where other family activities such as face painting were also set up for entertainment.
One of approximately 20 families present, attendee David Faverty and his family shared how special it was to find a community among other people impacted by rare disease. Faverty’s daughter, Kyria, is diagnosed with Rett syndrome, a rare neurological disease making it difficult for her to walk and communicate clearly. As a parent, Faverty discussed the importance of finding and developing a community built upon a desire to uplift each other.
“We came in here, and we’ve met the other families, and it’s kind of like a group that inspires each other,” Faverty said. “We’re just all together, and lift each other up … Our kids have different diseases, so we all have the same steps that we have to go through every day. It’s nice to have somebody to help support you because you’ve been through it.”
Outside of the Rare Disease Day event, more plans are currently underway for students to involve themselves in patient advocacy for rare disease. Calhoun and Conrad discussed how students in the science and patient advocacy minor are seeking out numerous other ways to involve themselves in initiatives inside and outside the classroom.
Some students have organized initiatives to update state resource guides while others are participating in the Schumacher Summer Immersion Grant Program, an opportunity to work full-time in non-profit rare disease spaces over the summer. The science and patient advocacy minor started with 25 students in 2022 and has since expanded to 90 students in 2025.
Calhoun and Conrad hope the Rare Disease Day event can promote hope and awareness within the rare disease community.
“Rare diseases can be really isolating and lonely,” Conrad said. “Because we have the patient advocacy program here [and] researchers here studying rare diseases, it’s my hope that people know that they’re not alone.”
