{"id":278623,"date":"2025-04-29T13:09:43","date_gmt":"2025-04-29T17:09:43","guid":{"rendered":"https:\/\/rarediseases.org\/?p=278623"},"modified":"2025-12-02T16:45:46","modified_gmt":"2025-12-02T21:45:46","slug":"s4r-earning-their-zebra-stripes","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/s4r-earning-their-zebra-stripes\/","title":{"rendered":"Undiagnosed: Medical Students Work to Change Rare Disease Curriculum"},"content":{"rendered":"

In honor of Undiagnosed Day on April 29<\/a>, the National Organization for Rare Disorders (NORD) celebrates the health care providers of today and tomorrow who are working to shorten the diagnostic odyssey that so many in the rare disease community have faced.<\/em><\/p>\n

Medical students are taught that “when you hear hoofbeats, think horses, not zebras.” It\u2019s a mantra rooted in probability \u2013 common conditions are more likely than rare ones. Yet for the 1 in 10 Americans living with a rare disease, being the “zebra” often means enduring a long road to diagnosis, marked by fragmented care and frustration.<\/p>\n

These challenges are likely exacerbated by the fact that rare diseases receive minimal attention in early medical training. To improve how people with rare diseases receive care \u2013 and help them secure a diagnosis sooner \u2013 a group of medical students from Georgetown University School of Medicine and the University of Pennsylvania Perelman School of Medicine, in collaboration with NORD, is working to transform medical education.<\/p>\n

The students\u2019 journey began at NORD\u2019s 2022 Breakthrough Summit, which they attended as members of NORD\u2019s Students for Rare<\/a> program. Their discussion centered on how to better integrate rare disease training into curriculum. This conversation resulted in a white paper,<\/a> \u201cZebras Among Us: Advocating for the 30 Million Americans Living with Rare Disease<\/em>.\u201d The publication outlined the challenges that rare disease patients face as well as opportunities to improve their care, starting with future physicians.<\/p>\n

Among several ideas, the paper highlights patient panels as a key training tool, used at both Georgetown and the University of Pennsylvania, where medical students hear personal stories from people living with a rare disease. These first-hand accounts bring abstract diagnoses to life and give students a glimpse into patients\u2019 positive and negative interactions with the healthcare system. For Georgetown student Eric Wan, the white paper\u2019s lead author, patient panels provide more than practical knowledge. They also help create empathy.<\/p>\n

\u201cThis isn\u2019t just about teaching students a bunch of facts. It\u2019s about creating a framework for lifelong learning and better patient care,\u201d said Wan. \u201cThe goal is to foster students\u2019 passions and skillsets as well as a mindset where no patient feels overlooked or unheard.\u201d<\/p>\n

Building on this momentum, the students embarked on developing a second manuscript. Led by Sharon Huynh, also attending Georgetown, the new research delved deeper into actionable strategies for implementing rare disease education, including a review of examples from medical schools around the world.<\/p>\n

\"Students
Students for Rare members Eric Wan and Sharon Huynh from Georgetown School of Medicine at NORD’s 2024 Breakthrough Summit.<\/em><\/figcaption><\/figure>\n

The students presented their initial findings at NORD\u2019s 2024 Breakthrough Summit<\/a>, reporting that different types of interventions \u2013 such as lectures, simulations and the use of artificial intelligence \u2013 significantly improved medical students\u2019 knowledge and regard for rare diseases. However, they also found that one critical piece \u2013 patient and caregiver perspectives \u2013 was rarely included, an outage that the students hope more medical schools will work to incorporate. A manuscript detailing their full findings is in review, with a goal of publication in 2025. \u00a0The team also is aiming to present their research at the 2025 American Medical Association (AMA) Annual Meeting.<\/p>\n

NORD\u2019s support has been instrumental, providing resources, patient connections, and opportunities for students to present their work at national conferences. Huynh sees this as just the beginning.<\/p>\n

\u201cOur hope is that we\u2019ve created a starting point for meaningful discussions, where curriculum makers nationwide are inspired to adapt and tailor rare disease education to their unique contexts,\u201d Huynh said.<\/p>\n

The students recognize the difficulty of integrating rare disease training into an already demanding medical curriculum. Collaborating closely with faculty, they are working to identify additional opportunities to embed rare disease education more consistently throughout all four years of medical school. Their hope is that these efforts will inspire other institutions to follow suit, not only increasing awareness about rare diseases but also creating a future generation of well-prepared healthcare providers.<\/p>\n

Robin Yoon, a fourth-year medical student at Georgetown, notes the change can\u2019t come soon enough.<\/p>\n

\u201cRare diseases are being discovered at an unprecedented rate\u2014up to 700 annually,” Yoon said. “It doesn\u2019t matter what specialty a medical student chooses, they\u2019re going to encounter rare diseases. The question isn\u2019t whether they\u2019ll see one but how prepared they\u2019ll be to recognize it and act with compassion and expertise.\u201d<\/p>\n

\"Students
Students for Rare from Perelman School of Medicine at the University of Pennsylvania and Georgetown School of Medicine. From L-R: William Gao, Yehuda Elkaim, Robin Yoon, Rolando Barajas, Eric Wan<\/figcaption><\/figure>\n

About NORD Students for Rare<\/strong><\/p>\n

NORD\u2019s Students for Rare program unites high school, college, and graduate students to learn about and raise awareness of rare diseases. Members develop leadership experience, network with like-minded peers and professionals, gain access to NORD webinars and educational resources, and receive priority consideration for scholarships to attend NORD conferences. The first Students for Rare chapter was established in 2015 at Keck Graduate Institute in Claremont, Calif, and the program has since grown to include more than 70 active clubs and chapters across the United States. Learn more here.<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

In honor of Undiagnosed Day on April 29, the National Organization for Rare Disorders (NORD) celebrates the health care providers of today and tomorrow who are working to shorten the … <\/p>\n

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