As we celebrate the 20 MSPA students from the class of 2025, we’re highlighting journeys that have shaped their advocacy work. Kim Nguyen entered the Minor in Science and Patient Advocacy with a desire to better understand the human side of healthcare. While preparing to graduate, she reflected on all the moments that helped shape her voice as an advocate. From thought-provoking classroom discussions to deeply personal conversations with rare disease patients and families, Kim shares what it meant to truly listen, learn, and grow.
Beyond the Minor: Walking With, Not Ahead
"When I walked onto Notre Dame’s campus, I had little idea what exactly it was I was looking for beyond graduating with a degree. I was moved by the mission that the school stood for, but academically, I was overwhelmed by the abundance of majors and minors, and honestly a little worried that I couldn’t compare to students who had supplementary majors and multiple minors to their degree. Everyone seemed to know exactly what they came to this school to do, and I was just trying to find my way around. So when I declared Science and Patient Advocacy as my minor, it seemed relatively straightforward—it matched everything I was familiar enough with: hands on work (although I didn’t know what that entailed), getting exposure to rare diseases, and patient advocacy seemed like a skill that wouldn’t hurt a pre-med student. Little did I know, it would become something that would reshape how I approach healthcare and my future career, my understanding of science, illness, and what it truly means to advocate for someone.
I had always had an interest in the human side of healthcare, thinking about ways to heal others by addressing bigger issues: gaps in healthcare including disparity, lack of access, and barriers to accessibility. These were all stories the healthcare system has too often overlooked. Within the minor, I took classes that inspired me to challenge how I approached issues in healthcare. Three in particular transformed my beliefs: Psychology and Medicine, Physician as a Writer; Writer as a Physician, and Rare Disease Advocacy Immersion.
In Psychology and Medicine, I explored questions of bias, compassion fatigue, grief, and being on the other side of the needle. We discussed questions of how even the most well-intentioned care can fail to consider the emotional and mental burden that illness carries. In Physician as a Writer; Writer as a Physician, I discovered the practice of narrative medicine—learning to read and write about suffering with nuance and care. We read literary works that centered around illness, identity, and healing, and explored how suffering is communicated through writing. Even if the writer is not an expert in medicine, all of us in some way are familiar with suffering. That class taught me that storytelling (and advocacy) isn’t just reflective—it’s revolutionary. It can shift perspectives, restore dignity, and even change policy. Finally, all my coursework seemed to tie together through Rare Disease Advocacy and Immersion class. Through the support of Professor Calhoun and the minor, I put the advocacy skills I learned into practice, collaborating with non-profit organizations, advocacy groups, families, physicians, and researchers to advocate through policy, marketing, and creative outlets. I sat down with families who were experts in their rare disease, I listened as advocacy leaders talked about the impact of grassroots movements and how as students we could help transform the direction of advocacy, and I saw firsthand how exposure to rare disease started from having conversations about them.
But it was my hands-on experience that really proved that advocacy wasn’t something that could be read about in the classroom. Through the minor, I was connected to internships at Friedreich’s Ataxia Research Alliance (FARA), E.WE Foundation, and Dyne Therapeutics. At FARA, I was able to analyze healthcare access within a rare disease, and interviewed individuals and families advocating for awareness, research funding, and dignity. It was advocacy in action, rooted in love and relentless hope. At Dyne Therapeutics, I witnessed what it means when companies genuinely partnered with the communities they served. I listened to patients lead the conversation about what “meaningful” outcomes meant to them—not just a cure, but something as overlooked as getting through the day without feeling drained, being able to dress themselves, and not living with uncertainty of what the future may hold. These moments reminded me that advocacy doesn’t always have to be loud; sometimes, it’s simply showing up and being willing to listen and learn.
Those experiences fundamentally shifted how I view healthcare. It’s not just about paperwork and baselines—it’s about honoring someone’s whole life, their dignity, their story beyond their rare disease. The minor gave me the vocabulary to name that truth and the confidence to advocate for it, even when the system doesn’t. It showed me the frustrations of caregivers with the insurance barriers and access to good healthcare. I learned that individuals with rare diseases often felt dismissed or treated as unintelligent, a reflection that failed to represent their true abilities.
As I go into my career in healthcare analytics, I plan to continue thinking critically about my work through a lens of advocacy. On the surface, it might seem like a world of data, powerpoints, and outcomes—but the minor has taught me to see the person behind the numbers. I get to be in the position to ask questions like: What does this data really say about a patient’s experience? Are we measuring what matters? Are we missing something human that is getting lost in quantitative outcomes? My background in patient advocacy will guide how I interpret patterns and push for insights that prioritize not just efficiency, but empathy. Disparities that affect people with rare diseases are often the same ones that shape all forms of medicine and patient care, and all of my coursework has taught me to use advocacy as a voice to amplify dignified healthcare.
If you’re a student considering this minor, my advice is simple: lean into it. There has been nothing that has made me feel as connected to what Notre Dame represents than what I have been able to experience through this minor. From the moment we're accepted, Notre Dame encourages us to become a Force for Good. Now that I am about to leave this school and the mission that I once accepted, I feel well-equipped to leave and continue my journey in advocacy with the tools, empathy, and confidence that the MSPA minor has provided me." - Kim Nguyen, 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.