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 10,000 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 every day. 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.