Spotlighting the Zebras: A Role for Medical Students in Shaping Rare Disease Care

Abstract

Rare diseases are collectively common, and thus very likely to be encountered in clinical practice. However, due in large part to deficits in medical training specific to these conditions, rare disease patients all-too often find themselves facing inadequate care. We are medical students representing institutions from the United States and Canada who believe that trainees can drive change in the landscape of rare disease care. In addition to highlighting a need for medical education to inculcate the knowledge and skills to effectively care for rare disease patients, we describe our efforts including a combination of peer-assisted learning, patient-oriented outreach, and interprofessional collaboration, which are intended to improve awareness of rare disease among future medical professionals.

What is the awareness of rare diseases among medical students? A survey in Bulgaria

“…Of course, the role of academic staff in this overall process is undeniable [ 50 , 51 ]. This is why experienced clinical instructors in RDs must be attracted to teaching and promoting this complex topic among medical students.…”

Factores asociados al conocimiento en enfermedades raras y huérfanas en estudiantes de medicina de la Universidad Privada San Juan Bautista, Lima 2022

“…Incluso los profesionales médicos de España (24) y Bélgica (8) no poseen un conocimiento adecuado sobre las ERH. en China, el 5,3% tenía un conocimiento moderado (25) y en EE.UU y Canadá el 92% de los estudiantes de medicina encuestados se sintieron mal preparados para brindar atención de ERH (26).…”