Join us for a weekend of storytelling, connection, and reflection at Notre Dame as we celebrate our theme: Rare Stories, Real Stars. This year, we honor the true stars of the rare disease community—the patients and families whose resilience inspires Notre Dame’s rare disease efforts. We invite you to join us for two days of events to honor those living with rare diseases and participate in the global #LightUpForRare movement.
Rare Disease Day Schedule
Friday, February 27 | RARE Documentary Screening & Panel*
3:00 – 5:00 pm | 105 Jordan Hall of Science
Walk the red carpet for a special screening of RARE, a documentary highlighting the lived experiences of those navigating rare diseases. Following the film, join a moderated panel discussion featuring director and producer, Lainey Moseley, alongside Amber Freed, Cathleen Reisenauer, and Allison Bradbury, MS, PhD.
*While children are always welcome at our events, please note that the film and panel discussion are intended for a mature audience and may not be particularly engaging for children.
Saturday, February 28 | 4th Annual Rare Disease Day Observance
4:30 – 7:30 pm | Jordan Hall of Science & Word of Life Mural (Hesburgh Library)
- 4:30 – 6:45 pm | VIP Welcome & "Setting the Scene"
Pick up your Rare Disease Day credentials and enjoy family-friendly, star-themed activities, including a "Hollywood Wall of Fame," star-shaped cookie decorating, face painting, a "Paparazzi" photo station to strike a pose on the red carpet, and a scavenger hunt. - 5:30 – 6:45 pm | Cast & Crew Dinner Gathering
Enjoy a casual buffet dinner in the Jordan Hall Galleria while connecting with families, students, staff, and faculty. - 7:00 – 7:30 pm | The Closing Scene: A Moment of Light & Hope
Join our procession to the Word of Life Mural ("Touchdown Jesus") for a blessing led by Fr. Pete McCormick and illumination ceremony. We will join the Global Chain of Lights to honor those impacted and celebrate the resilience of our community.
Casual dress is appropriate for all events.
