It is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Although understanding the experience of a person with a rare disease can enable improved health, faster and more accurate diagnosis, and better care for individuals and families living with rare diseases, medical professionals often do not receive training to recognize a patient with one of the nearly 8,000 identified rare diseases.

For the past 7 years, the RARE Compassion Program has provided a unique opportunity for medical students to develop relationships with patients and their families experiencing a rare diagnosis, with the goal of developing compassion and awareness for the challenges that individuals diagnosed with a rare disease are faced with everyday. This program is committed to address inequities and disparities within the medical profession by pairing medical students and patients from underrepresented and/or minoritized communities with the goals of fostering meaningful patient-doctor relationships, improving cultural congruence, and nurturing future advocates in rare disease.

Each year, the program connects medical students with individuals and families with rare diseases to help foster meaningful doctor-patient relationships, inspire careers in rare disease care and research, and ultimately, through patient-centric listening and interactions, build the next generation of future medical professionals as key advocates for their patients.

This year, medical students will be provided the opportunity to meet with pediatric and adult patients in a 4-part rotation, and we are especially encouraging medical students and individuals with rare diseases  from underrepresented and/or minoritized communities to participate in the program.

Individual / Family End of Rotation One Webinar Panelists

May 25th, 1pm – 2pm EST
Theme: Vulnerability and Trust in doctor/patient relationships

Student End of Rotation One Webinar Panelists

May 29th, 5pm – 6pm EST
Theme: The Rare Diagnostic Odyssey

David R. Cox Scholarship Winners

The David R. Cox Scholarship is an opportunity offered to medical students through our Rare Compassion Program. At the end of the year, participants were asked to submit an essay about their experience working with rare patients and families throughout 2021. Among the numerous essays received, three winners were selected. 

Natalie MorrisA Powerful Perspective: Seeing Through the Eyes of a Patient

Natalie Morris, Medical Student at Cooper Medical School of Rowan University in New Jersey and winner of 2021 Cox Scholarship

“Because of my lack of interaction with individuals with rare diseases, I had few preconceived notions surrounding the rare community. I mostly thought about how hard it must be to have a disease that is rare and may not have a treatment, which is why I wanted to participate in the program. I envisioned myself as a physician, seeing a patient with a disease I read about once as a first-year medical student and not knowing…”

Read More

Helena YanGoing the Extra Mile

Helena Yan, Medical Student at University of Illinois at Chicago in Illinois and winner of 2021 Cox Scholarship

“I first learned of rare diseases in college, while shadowing a pediatric neurologist who ran  a clinic for rare white matter diseases (leukodystrophies). One patient that I still think of after all  these years is JJ1. JJ and his family had recently moved to the US from India for the sole purpose  of seeking medical attention. When he was five, JJ got sick and started having trouble seeing and  walking. For the next ten years, his parents brought him to countless neurologists around India in  the search of a diagnosis, but no one was able to offer an answer. Finally, a doctor suggested that…”

Read More

Swathi BalajiHearing Hoofbeats

Swathi Balaji, Medical Student at University of Southern California Keck School of Medicine in California and winner of 2021 Cox Scholarship

“In college, I had done four years of research on rare forms of diabetes. I had interviewed patients with monogenic diabetes and witnessed just how devastating it was to be misdiagnosed with Type 1 or Type 2 diabetes and waste thousands of dollars on inappropriate treatments. After my experiences with these medical zebras, the diagnostic odyssey that RARE patients face became even more profound and solidified my resolve to be…”

Read More