Community Engagement
Engage with the Patient Advocacy Initiative
The Notre Dame Patient Advocacy Initiative is dedicated to supporting and empowering the rare disease community through impactful programs and meaningful engagement. Whether you're a rare disease patient, caregiver, healthcare provider, or industry partner, there are numerous ways to get involved and collaboratively make a difference. Our goal is to create opportunities for patient advocacy, collaboration, and education, while fostering a supportive network for all who are impacted by rare disease.
Explore the various opportunities to get involved with the Patient Advocacy Initiative, whether through attending our events, contributing to our programs, or by sharing your story. No matter your role in the rare disease community, there's a place for you here!
The Schumacher Patient Partnership Project
A semester-long partnership between a pair of students and rare disease patient and/or caregiver. Through a series of conversations, students in the minor learn about living with a rare disease and then develop a final project and deliverable in partnership with their Patient Partner.
The Schumacher Summer Immersion Grants Program
A 10-week summer program that provides students with stipends to work directly with a Patient Advocacy Organization, providing a knowledge and experience gain for the student, and extra capacity for the organizational partner.
Organizational Engagement Projects
Through the #RAREis Immersion Course (known to students as BIOS 40451), collaborating organizations help mentor students through a semester-long project that benefits their organization. Students provide a final presentation along with final deliverables.
Annual Rare Disease Patient Advocacy Summit
Hosted each fall, the Annual Patient Advocacy Summit provides attendees with the opportunity to learn directly from caregivers and patients living with rare diseases, experts from industry, as well as clinicans and policymakers, through plenary discussions and a series of panels. The Annual Rare Disease Patient Advocacy Summit is hosted in partnership with Amgen and Dyne Therapeutics.
Annual Rare Disease Day Observance
In solidarity with all those recognizing Rare Disease Day around the globe, the Patient Advocacy Initiative leads Notre Dame's participation by joining the #LightUpForRare movement and illuminating an iconic campus landmark, the Word of Life Mural (often referred to as Touchdown Jesus) in rare disease colors. Luminaries are also lit and displayed around campus in honor of those impacted by rare disease.