News Summary
The Hesburgh Library at the University of Notre Dame was beautifully illuminated in various colors on Rare Disease Day. This event aimed to raise awareness about rare diseases, fostering community support and involvement among students and families. With increased attendance and participation, the gathering served as a platform for sharing stories, building bonds, and encouraging advocacy in the rare disease community.
Hesburgh Library Shines Bright for Rare Disease Day
On February 28, the magnificent Hesburgh Library at the University of Notre Dame was lit up in a stunning display of green, blue, pink, and purple lights to mark Rare Disease Day. This colorful show isn’t just for visual appeal; it’s part of a larger initiative happening all month long, which is dedicated to raising awareness and honoring those affected by rare diseases.
Illumination with a Purpose
February is acknowledged as Rare Disease Month, and this year’s event proudly continued the tradition of illuminating the library while also adding some exciting new activities. The preparations for this heartwarming day didn’t happen overnight; approximately six months of planning went into ensuring that everything ran smoothly. In charge of those efforts were passionate organizers who focused on building community support and making a difference.
Community Spirit Takes Center Stage
This year saw a delightful increase in student involvement, particularly from those studying subjects like science and patient advocacy. Over 30 enthusiastic students signed up to volunteer, dedicating their time to making the event a memorable experience. These students got busy creating luminaries and managing activity stations, helping to foster a welcoming atmosphere for families.
Alongside the student volunteers, several organizations joined forces to make this event a success. Well-known local entities, including RareND and the Make A Wish club, pitched in to amplify the day’s impact. Additionally, Uplifting Athletes offered their support by signing footballs for families impacted by rare diseases and sending members of their cheer team to bring some extra cheer to the event.
Family Attendance and Activities Galore
One of the highlights of this year was the significant boost in family attendance. A whopping 20 families registered for the event, more than doubling the attendance from the previous year. The goal of this vibrant gathering was clear: to create a strong sense of community and offer essential support for families navigating the complexities of rare diseases.
Sharing Stories and Building Bonds
Adding a personal touch to the event, two students took to the stage to share their heartfelt stories about their own experiences with rare diseases. Reflective prayers were also an important part of the gathering, bringing a sense of unity and hope.
To ensure that families enjoyed the evening, a lovely dinner was served at Jordan Hall, complete with fun activities like face painting. This combination of nourishment and entertainment created a cozy and supportive environment where families could connect with one another.
Finding Community and Hope
For many attendees, like David Faverty, the chance to find a community among others facing similar challenges is both uplifting and reassuring. Families expressed that having a support network is crucial, especially when dealing with the emotional toll of rare diseases.
Bright Future for Student Involvement
In recent years, the interest in the science and patient advocacy minor at Notre Dame has surged, growing from 25 students in 2022 to a remarkable 90 in 2025. This increase is a testament to the rising interest in patient advocacy and the importance of supporting individuals affected by rare diseases.
Beyond Rare Disease Day
Looking ahead, plans are in motion to encourage even greater student involvement in patient advocacy beyond just Rare Disease Day. Initiatives like updating state resource guides and organizing summer internships will provide valuable opportunities for students to make a difference in the community.
In the end, the overarching aim of this vibrant and thought-provoking event is to promote hope and awareness within the rare disease community. Through shared experiences and community bonding, participants left with a renewed sense of purpose and a commitment to advocating for those who often feel alone in their struggles.
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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
