Accordingly, several rare disease-focused foundations have recognized the value of engaging early investigators and clinicians and now offer a variety of programs to expose learners to clinically relevant information. One area for improvement in rare disease care begins with developing adequate vocabulary among trainees future providers need increased breadth of basic medical knowledge about rare diseases. In particular, we highlight initiatives organized by a network of medical student groups in the United States and Canada. Here, we provide examples, including our own experiences, of ways that medical students can collectively improve our ability as healthcare providers to impact the future of rare disease care, as well as ways that curricular activities could support these efforts. Our hope is that, reciprocally, medical educators support the mission of helping students develop the skills to provide effective care in the face of a paucity of evidence. We thus have the opportunity to shape rare disease care and future outcomes. We medical students are thus uniquely positioned to shift the paradigm of what we are exposed to in terms of rare, starting with exposure to early-career engagement opportunities. Medical school represents a critical time during which our career choices are beginning to crystallize, molded by our interactions with peers and patients. This raises the value of devoting attention to rare diseases outside the standard medical curriculum. However, future providers must acquire insight into the experiences of rare disease patients and families to be empathetic and trustworthy sources of information, recipients of feedback, and agents of care. Information on rare diseases may be scarce and protocols for patient care poorly established. 7, 8Īs trainees, we recognize that acquiring medical knowledge is time- and resource-constrained. 2, 5, 6 Lymphatic and other vascular anomalies are a particular example of such educational gaps, with the average medical student receiving less than an hour of formal instruction on lymphatic biology over their 4 years of medical training. In another study, patients cited inadequate rare disease–specific training of clinicians and healthcare workers as the reason that 78.8% of rare disease patients have received inappropriate care. 2, 4 These concerns originate at least partly at the level of (pre-)clinical training in 10 study, 92% of surveyed medical students felt ill-prepared to provide rare disease care. 2, 3 These patients and their families report navigating unique challenges, including limited knowledge, difficulty connecting with other patients and resources, exhausting routes to diagnosis that may take years, and insensitivity among busy providers. 2 The World Health Organization (WHO) estimates that 400 million individuals are living with rare diseases. The European Union (EU) defines rare diseases as those affecting less than 1 in 2000 persons, and the United States considers disorders affecting under 200 000 patients in the country as rare. Students must learn the skills to make clinical decisions when facing noncanonical disease presentations or conditions for which extant evidence is limited.Īlthough there is no universally recognized definition of a rare disease, the notion of conditions that individually affect a small portion of the population is well-established across political, legislative, and healthcare frameworks. Empowering trainees to care for patients with rare diseases is thus an unmet need. 1 This practice is essential to medical education however, many rare diseases lack sufficient knowledge and data to be prioritized under an EBM framework. Contemporary medical education follows the precepts of evidence-based medicine (EBM), favoring decision-making guided by large observational studies and clinical trials and emphasizing heuristics that associate patient presentations with common pathology.
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