Notre Dame Stories
A vision of hope: Notre Dame community rallies to serve rare disease patients and their families
Twenty rare diseases are studied and advocated for at the Boler-Parseghian Center for Rare and Neglected Diseases. Three hundred undergraduate students are engaged in that research, including 65 students enrolled in the patient advocacy minor. It’s the first patient advocacy program in the country to focus its efforts on supporting the rare disease community.
“Patient advocacy is about amplifying the voice of the patient, understanding that the patient and their caregivers are the experts in their disease, and treating them as such.”
— Barb Calhoun, the Reisenauer Family Director for Patient Advocacy Outreach and Education, College of Science
