Day for rare diseases illuminates diseases, community, initiatives

Green, blue, pink and purple illuminated the walls of the Hesburgh Library to remember on Friday, February 28th in the Notre Dame Community in the Notre Dame community.

The month of February marks the official compliance of the month for rare diseases, a time for people who honor patients with rare diseases and raise awareness. This year, Notre Dame continued his tradition to shed light on the Hesburgh library with the official rare disease colors and at the same time organize other activities in order to remember the day of rarity.

The events were conducted by Katrina Conrad, program manager for the initiative for patient representative, and Barbara Calhoun, director of the patient representative initiative. The two work as a team to plan outpatient programs and began event planning for rare diseases almost six months ago.

Although some parts of the day have remained the same for rare diseases by Notre Dame, such as the outer lights of Hesburgh Library, Conrad and Calhoun have also implemented changes, such as:

“We have over 30 students who have registered in one way or another in voluntary work, be it through lights, grotto prayer inquiries or helps to carry out activity stations tonight,” said Conrad. “In addition to the students in the minor, we are also happy to be accompanied by rarend this year and the make a Wish club on campus.”

Conrad continued: “We had additional support from uplifting athletes … In advance, they had a number of their teammates signing footballs for the families, and then several members of the cheer team will come by.”

In addition to an increase in the participation of the students, Conrad and Calhoun also determined an increase in the presence of families who have rare diseases at the event.

“Last year we registered seven families and this year it is 20,” said Calhoun. “Bringing the community on campus is really what we work towards so that we can allow it [the families] Know that we are here and that they are available to come whenever they want and with whom they want. “

Calhoun explained: “The largest of patients with rare diseases is that they are often marginalized in terms of care they receive … they have to cover such distances to see experts who understand their illness, and there is only as much complexity I think [are] overwhelming and insulating. For such events that we have, we want you to come and we want you to do it [know that] It is her day. “

With an increase in both the student and the general community visit, the day with rare diseases also had some other additions to programming. Unlike in previous years, this year's event consisted of two student comments from Junior Tim Theisen, a student in the Moll Science and Patient Advocacy, and Junior Annie Hamilton, a student at Friedreich's Ataxia. In addition to reflective prayers and verbal comments, dinner for the families in the Jordan Hall took place, where other family activities such as make -up were also set up for entertainment.

One of around 20 families present, the participant David Faverty and his family announced how special it was, among other things to find a community affected by rare diseases. Faverty's daughter Kyria is diagnosed with the Rett syndrome, a rare neurological disease that makes it difficult for her to be unambiguous and communicate. As a parent, Faverty discussed how important it is to find and develop a community based on the request to raise each other.

“We came here and we met the other families and it is like a group that inspires each other,” said Faverty. “We are all together and stand up to each other … Our children have different diseases, so we all have the same steps that we have to go through every day. It's nice to have someone who supports them because they went through it. “

Outside of the event on the rare day of the disease, further plans for students are currently underway in order to involve the attorney for rare diseases. Calhoun and Conrad discussed how students in science and patient representatives look for numerous other opportunities to involve themselves in initiatives inside and outside the classroom.

Some students have organized initiatives to update the state resource leaders, while others take part in the summer program to immerse themselves in Schumacher Sommer. The minor of Science and Patient Advocacy started with 25 students in 2022 and has since expanded to 90 students in 2025.

Calhoun and Conrad hope that the event for rare diseases can promote hope and awareness in the community of rare diseases.

“Rare diseases can be really insulating and lonely,” said Conrad. “Because we have the patient representative program here [and] Researchers here who examine rare diseases, I hope that people know that they are not alone. “