Rare Disease Day Lights Up Notre Dame Community

News Summary

On February 28, Notre Dame’s Hesburgh Library was illuminated with vibrant colors for Rare Disease Day, an event honoring those affected by rare diseases. Organized by student advocates, the celebration featured community involvement, activities, and heartfelt stories shared by participants. The increase in family participation highlighted the event’s growing significance, fostering a sense of belonging and shared resilience in the community. Plans for future initiatives aim to deepen student engagement in patient advocacy and continue raising awareness for rare diseases.

Lights, Community, and Hope: Rare Disease Day Sparkles at Notre Dame

On February 28, the iconic Hesburgh Library at the University of Notre Dame was transformed into a dazzling display of color. Green, blue, pink, and purple lights shone brightly, marking the celebration of Rare Disease Day and honoring those affected by rare diseases.

February is recognized as Rare Disease Month, a time dedicated to raising awareness and reflecting on the experiences of individuals living with rare diseases. This year, the event continued a cherished tradition of illuminating the library while also introducing an array of new activities aimed at honoring the cause and enhancing community involvement.

Planning for Change

The exciting event was organized by Katrina Conrad, the program manager for the Patient Advocacy Initiative, and Barbara Calhoun, the director of the initiative. They dedicated nearly six months to crafting a day filled with reflection and activity that would engage students and families alike.

While some time-honored elements of the event remained intact, such as the stunning illumination of the library, there were noticeable changes this year. There was a surge of student involvement driven by those enrolled in the science and patient advocacy minor. Over 30 students eagerly volunteered, participating in a variety of tasks, from creating luminaries—beautiful handcrafted lights that lined the venue—to managing activity stations aimed at engaging attendees.

Community Spirit Shines Brightly

The event blossomed with the support of external organizations. Nonprofits like RareND and the Make A Wish club joined in the festivities, bringing their vibrancy and mission to the gathering. Adding a special touch, Uplifting Athletes contributed as well by signing footballs for affected families and sending cheer leaders to uplift the spirits of attendees.

This year marked a notable increase in family participation. With 20 families registered, the event welcomed over double the attendees compared to just seven the previous year. The atmosphere was filled with hope and camaraderie, as families gathered to share their experiences and support one another.

Sharing Stories of Resilience

As part of the program, there were heartfelt remarks from students Tim Theisen and Annie Hamilton. They shared their own stories, connecting their personal experiences to the theme of rare diseases. The event also included reflective prayers and a warm dinner catered at Jordan Hall, where families enjoyed activities like face painting, further fostering a joyful and supportive environment.

A Growing Community

David Faverty, one attendee, expressed the importance of finding a community among others dealing with rare diseases. This sense of belonging is crucial, as families navigate the complexities of their unique challenges. The growth of Notre Dame’s science and patient advocacy minor underlines this increasing interest and engagement—expanding from 25 students in 2022 to a robust 90 in 2025.

Looking to the Future

Exciting plans are already in motion for extending student involvement in patient advocacy beyond Rare Disease Day. Initiatives include updating state resource guides and offering summer internships, ensuring that advocacy for rare diseases remains a priority.

In summary, the events at Notre Dame on Rare Disease Day beautifully encapsulated a blend of community spirit, hope, and awareness. By bringing together families, students, and organizations, the day not only raised awareness for rare diseases but also strengthened the bonds within this special community. As we continue to spotlight these rare conditions, every light that shines in support of those affected brings with it a flicker of hope that cannot be dimmed.

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Additional Resources

• NDSMC Observer: Rare Disease Day
• Wikipedia: Rare Disease
• NBC Sports: Fighting for Patients
• Google Search: Rare Disease awareness
• WNDU: FDA Approved Treatment
• Google Scholar: Rare Disease Research Notre Dame
• Inside Indiana Business: Rare Disease Research
• Encyclopedia Britannica: Rare Disease Research
• South Bend Tribune: Rare Diseases Center
• Google News: Rare Disease Awareness Events