News Summary
On February 28, the Hesburgh Library at the University of Notre Dame illuminated in vibrant colors to celebrate Rare Disease Day and raise awareness. The event, supported by student volunteers and organizations, aimed to foster community among families dealing with rare diseases, improving participation from previous years. With engaging activities, heartfelt reflections, and collaborative efforts, the evening symbolized support, hope, and unity within the rare disease community.
Bright Lights and Big Hearts: Celebrating Rare Disease Day at Notre Dame
On February 28, the Hesburgh Library at the University of Notre Dame dazzled in a radiant display of green, blue, pink, and purple lights to mark Rare Disease Day. This event was part of a month-long recognition of February as Rare Disease Month, a time dedicated to raising awareness and honoring those touched by rare diseases.
For years, illuminating the library has become a cherished tradition at Notre Dame, and this year was no exception. However, organizers decided to spice things up with new activities aimed at further engaging the community and encouraging student participation. With an enthusiastic approach, the event echoed the commitment to support families affected by rare diseases while also fostering a sense of togetherness.
Behind the Scenes: Planning for Impact
The masterminds behind this heartfelt gathering were Katrina Conrad, the program manager for the Patient Advocacy Initiative, and Barbara Calhoun, the initiative’s director. The duo dedicated almost six months planning the affair, ensuring every detail would cater to the needs of families facing rare diseases. Their efforts paid off as the event saw a significant increase in participation and community involvement.
This year, over 30 students rolled up their sleeves as volunteers, a striking increase reflecting the growing interest in the field of patient advocacy. Students from the science and patient advocacy minor lent a hand by aiding with various tasks such as making luminaries and managing activity stations throughout the night.
Bringing additional support, organizations like RareND and the Make A Wish club joined the festivities, creating a vibrant atmosphere filled with camaraderie and good cheer. The event also saw the enthusiastic participation of Uplifting Athletes, who took a thoughtful approach by signing footballs for families in need and sending cheer team members to spread some extra enthusiasm.
A Growing Community of Hope
A remarkable shift was evident in the event’s turnout — this year, 20 families were registered to attend, a significant rise from just seven the previous year. The event aimed to weave a sense of community that bolsters support for families dealing with rare diseases. Students shared personal stories, demonstrating the profound impact of these conditions and the strength derived from community engagement.
Aside from heartfelt remarks from students about their experiences with rare diseases, the gathering also included reflective prayers and a warm dinner hosted at Jordan Hall. Families enjoyed entertainment options like face painting, making it a fun-filled evening for everyone involved.
One attendee noted that discovering a sense of community among others who understand their struggles is invaluable for families navigating the challenges of rare diseases. As families joined hands and hearts, the evening blossomed with hope and healing.
The Future of Patient Advocacy
The student interest in the science and patient advocacy minor has surged impressively, growing from 25 students in 2022 to an impressive 90 in 2025. This upward trend signifies a bright future for the realm of patient advocacy, hinting at influencing a new generation dedicated to lending their voices to these crucial issues.
Plans are swelling for even greater student involvement in patient advocacy beyond just Rare Disease Day. Initiatives are set to include efforts such as updating state resource guides and offering summer internships targeted at deepening students’ hands-on experiences in this vital field.
The overarching aim of such events continues to promote hope and awareness within the rare disease community. While the spotlights shone brightly on the library that night, it was the heartwarming spirit of unity and compassion that truly lit up the evening.
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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
