Advocacy & Education
Notre Dame aspires to be the premier institution for rare disease research, training and advocacy, and serve as a benchmark for institutions around the world.
Patient Advocacy Initiative
In 2021, the Center and Notre Dame’s College of Science launched a minor in science and patient advocacy to provide undergraduate students with critical skills and understanding of the multifaceted challenges needed to advocate effectively for rare disease patients.
It’s the first patient advocacy program in the country to focus its efforts on supporting the rare disease community. And more than that, the minor provides students hands-on experience to benefit patients and their families.
The Patient Advocacy Initiative is anchored by the interdisciplinary Minor in Science and Patient Advocacy (MSPA) and builds on the University’s research strength in rare diseases. The Initiative provides comprehensive programming that advances advocacy, outreach and education to better serve the rare disease community, as well as train the next generation of rare disease patient advocates.
The Minor in Science and Patient Advocacy
This adjunctive patient advocacy minor trains in the skills necessary to collaborate with stakeholders such as researchers, clinicians, regulators, pharmaceutical companies, and patients to bridge the gaps in knowledge exchange and enhance positive health outcomes. It also provides scientific training in advanced knowledge of current and emerging technologies in research and clinical medicine relevant to rare diseases with the goal of providing trainees with the scientific proficiency needed to be effective patient advocates of rare diseases.
Rare Disease Day
The College of Science, Hesburgh Libraries, the Boler-Parseghian Center for Rare Diseases, and the Patient Advocacy Initiative at the University of Notre Dame partner to show their support for those affected by rare diseases on Rare Disease Day each year. By lighting up campus landmarks, like the Word of Life Mural (popularly known as "Touchdown Jesus"), in Rare Disease Day colors, we participate in a world-wide display of solidarity with the 300 million people living with a rare disease.