After graduating from Notre Dame with the Minor in Science and Patient Advocacy, Noelle Dorvault (ND '25) stepped into her first year at the University of Florida College of Medicine with something more than prerequisite knowledge—she carried a rare blend of scientific grounding, patient-centered listening, and real-world advocacy experience. In this Beyond the Minor reflection, Noelle describes how the MSPA shaped her understanding of rare disease from many angles—research, policy, nonprofit work, and, most importantly, the lived experiences of patients and caregivers—and how those lessons continue to guide her in every classroom and clinical encounter today.
Beyond the Minor: Carrying Patient Advocacy to Medical School
"Since graduating with the minor in Science and Patient Advocacy (MSPA) as part of Notre Dame’s class of 2025 and beginning medical school at the University of Florida College of Medicine (UFCOM), the insights gleaned from the MSPA courses, rare disease research and advocacy conferences and patient interactions have only become more relevant. This program gave me the opportunity to encounter the continuously developing challenge of rare disease from the disparate invested groups that come together around rare diseases, with the patients at the core. As an MSPA student, I explored the perspective of a researcher, investigating the pathogenesis of the rare inborn error of metabolism non-ketotic hyperglycinemia in a developmental biology lab.
Furthermore, leaders in rare disease research across the country shared the challenges they face and the goals they aspire to in panels, presentations, and conferences. We explored the perspectives of investors, business leaders, and even put ourselves in the shoes of the FDA members approaching this issue through in class activities and panel discussions. We traversed the complexities of insurance, clinical trial participation, and changing legislation through working alongside various advocacy organizations, such as the National Organization for Rare Disease (NORD) and the Foundation for Sarcoidosis (FSR). Most important for my current career path, we spoke directly to patients, their families and their support systems about their lived experience. This diversity of academic enrichment gave me a nuanced look at how patients with rare diseases ultimately receive the care they need and erased a previous naivety that there is a simplistic solution when so many parties are involved. However, the summation of all these voices gave me hope that there are so many who care deeply about this issue and are investing their unique talents towards a solution. Though interest groups may disagree at times, I believe that the current wave of rare disease research and advocacy is showing that we can be unified in the ultimate goal of uplifting patients and their families.
I continue to use the skills I developed in MSPA as a medical student. My time at UFCOM began with courses in genetics, and our professors invited many patients with rare genetic diseases to speak with us. It harkened back to MSPA grand rounds and presentations in our classes at Notre Dame in a remarkable way. Active listening during patient presentations and patient interviewing are both essential on this journey, and I am grateful to have begun to develop my skills as an undergraduate. During these presentations, I find that because of my background with this program, I am sincerely inclined to bring out the untold stories of the caregivers, who support the patient along their journey. It has pushed me to ask questions of their experience and seek out their voices, which will stay with me in my future medical practice." - Noelle Dorvault, Class of 2025
Beyond the Minor is a guest-authored reflection series from the Patient Advocacy Initiative that highlights the experiences, growth, and impact of current students and alumni. From classroom insights to community engagement, these reflections capture the many ways students carry their advocacy forward - in their own voices.