Schumacher Patient Partnership Project
Empowering the Patient Voice
The Schumacher Patient Partnership Project is a semester-long partnership between a pair of students and rare disease patient and/or caregiver that takes place in the final class of the minor each spring. 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 goal is that students:
- Gain a deeper understanding of needs and barriers that rare families face.
- Increase their comfort when interacting with rare families.
- Learn how advocacy is interwoven in a patient family’s life.
“What I liked best about working with the students on the Patient Partnership Project was the opportunity to get to know them on a personal level. Engaging with them and sharing my experiences was incredibly rewarding. Educating them about my disease and making them more aware of the myriad challenges that I and others with rare diseases face was a powerful experience. I could see their growing understanding and empathy, which was truly heartening.” -Patient Partner, 2024
Interested in serving as a partner?
The Schumacher Patient Partnership Project cannot exist without the support and guidance from the experts - patients and their caregivers. Here's what we invite our Patient Partners to do:
- Have three, 45-60 minute conversations with a small group of students between February and April (over the phone or a video call, you don't have to be local to Notre Dame to participate) to collaboratively develop a storytelling project.
- Participate in a post-semester survey so we can learn more about your experience as a Patient Partner.
Sound like something you'd enjoy?