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Rare Disease Day Observance

Honoring the Rare Disease Community

Word of Life Mural illuminated in rare colors

Each year, the Notre Dame community comes together to observe Rare Disease Day, an international observance held on the last day of February each year. Our efforts focus on honoring those impacted by rare diseases, especially patients and caregivers.

Join our Rare Disease Day Efforts:

Global #LightUpForRare Movement

As part of the worldwide #LightUpForRare campaign, Notre Dame joins iconic landmarks around the globe in lighting up in rare disease colors. Here on campus, the famous Word of Life Mural (also informally known as "Touchdown Jesus") is illuminated in blue, pink, and green in order to shine a spotlight on rare diseases, and amplify the voices of patients, advocates, and families.

Luminaries in varying shades of pink, green, and white line a ledge. The bags have small cutouts that allow the inner light to shine through. In the bottom left corner, a graphic features a shamrock and the words "Fighting Irish Fighting Rare."

Luminary Dedication Initiative

We invite you to honor those affected by rare diseases through our luminary dedication initiative. Students in the minor in science and patient advocacy read all requests and create luminaries to be displayed around campus on Rare Disease Day. Each luminary bag is a symbol of hope, courage, and remembrance. You can request a luminary bag in honor of someone special by completing the request form.

Luminary Request Form

 

Illuminating Rare in Community

Smiling Notre Dame athletes and students pose with a diverse group of children, some in wheelchairs or wagons, at a Fighting Irish Fighting Rare event. A vibrant balloon arch frames a banner, with museum displays and a giraffe statue in the background.
Members of ND Uplifting Athletes pose with visitors at the 2025 Rare Disease Day event.

Our Rare Disease Day observance is a family-forward celebration designed to bring together patient families, students, and the broader community in a spirit of connection. Through hands-on activities, interactive displays, and special guests, families and students have the chance to learn from one another, share experiences, and build lasting relationships. The event creates a welcoming space where all who are impacted by rare diseases—or inspired to make a difference—can come together to honor stories, spark curiosity, and strengthen our shared community.

This celebration is made possible through collaboration with several student organizations including Notre Dame Uplifting Athletes, RareND, and the Make-A-Wish Club, whose members help create a fun and engaging experience for all who attend. Their support brings energy, creativity, and compassion to the day—whether through planning activities, leading interactive stations, or welcoming families to campus—reflecting the University’s shared commitment to building community through empathy and action.