Rare Disease Interest Group (rareDIG) at McGill University: A Medical Education Pilot Project

Abstract

One in 12 Canadians have a rare disease, yet medical education continues to espouse Dr. Woodward’s aphorism “when you hear hoofbeats think horses, not zebras.” This produces physician attitudes which are deleterious to the care of people with rare diseases. The McGill University Rare Disease Interest Group (rareDIG) has created programming which sensitizes medical students to the extent and reality of rare diseases.

rareDIG helps them to develop attitudes and approaches which shorten the diagnostic odyssey and improve care of people with rare diseases. Success stems from drawing attention to the realities of rare disease through direct patient interaction, creating a strong social media presence, and building collaborations with rare disease advocacy groups and networks. Our inaugural Rare Disease Day event was attended by over 100 attendees including medical students, patients and their families, and a variety of health professionals.

Other successes include a Patient Perspective Series addressing the holistic approach to rare disease, shadowing opportunities, “n = rare” journal clubs, and a “Humans of Rare Disease” advocacy project. Medical students represent an important cohort to target with rare disease awareness campaigns that has largely been overlooked by current advocacy efforts. By exposing medical students early in their education to the realities of rare diseases, student-run interest groups can improve medical students’ understanding and perception of rare diseases and ultimately improve patient care in the future. rareDIG strives to continue achieving its objectives in rare disease education and aide other medical schools in creating their own rare disease student groups.