Andra Stratton brings more than professional experience to her advocacy — she brings lived perspective. As a member of the Chan Zuckerberg Initiative's Rare As One team, Andra has helped build capacity in patient-driven research and advocacy organizations, while also having founded her own nonprofit for lipodystrophy. Andra also graciously serves as an ongoing, trusted partner to the Minor in Science and Patient Advoacy. In this Shared Ground reflection, she shares how the minor is preparing students to match heart with expertise.
Shared Ground: Where Heart Meets Expertise
In the rare disease community, we often say, "No one goes to school to learn how to run a rare disease nonprofit", reflecting the reality that most rare disease organizations emerge from crisis—founded by patients or parents thrust into advocacy after receiving a devastating diagnosis with few answers and even fewer resources.
The Minor in Science and Patient Advocacy (MSPA) is fundamentally changing this narrative. This groundbreaking program educates bright, compassionate, and motivated young professionals about the complex realities facing rare disease patients. Whether these students eventually work in nonprofits, research institutes, medical institutions, or biotechnology companies, they enter their careers with essential tools and a deep understanding of what our community truly needs.
I have had the privilege of working with students from Notre Dame’s MSPA in two distinct and impactful roles. First, as Program Manager of the Rare As One Network at Chan Zuckerberg Initiative, I have had the privilege to kick off new semesters of students with an overview of patient-driven research before the class launches into semester-long projects with a patient organization (many of whom have been Rare As One grantees and are actively building capacity with exciting projects). My second interaction with MSPA is via the summer internship program, where the organization I founded to support people with my disease, lipodystrophy, was paired with an intern for the summer of 2025.
Working with Rowan this summer provided a window into the important alignment between the values of the students who are pursuing an MSPA and the needs of small PAGs in the rare disease community. Rowan displayed both curiosity and compassion when learning about lipodystrophy, when researching the disease, when engaging with patients, and when sharing his learnings with medical professionals and other stakeholders at ENDO. The fresh perspective on the disease sparked new excitement for our team. We were regularly wowed when Rowan returned a project that had been assigned.
During semester kick-offs, I have observed that the real-time learning that makes the Notre Dame program so vital is its recognition that effective rare disease advocacy requires both heart and expertise. As students engage with patient advocacy groups (PAG), they learn the science, yes, but they also learn:
- How to bridge communication between researchers and patient communities
- How to identify and address the real-world challenges patients face daily
- How to transform patient experiences into actionable research priorities
The students further learn that behind every research question is a family waiting for answers. Behind every clinical trial is a community hoping for better days. Behind every data point is a human story of resilience, frustration, hope, and determination.
The future of rare disease research lies in our youth, and the MSPA program is leading the way." - Andra Stratton
Shared Ground is a guest-authored series featuring stories from the patients, caregivers, advocates, and community partners who collaborate with students in the Minor in Science and Patient Advocacy. These firsthand reflections explore what it means to learn together, and why lived experience belongs at the center of advocacy education.