The Johns Hopkins Rare Disease Interest Group (RareDIG) is a community at JHUSOM focused on advocating for rare disease research and awareness. We hope to increase rare disease discussion early in medical training to showcase its importance and how to appropriately evaluate a patient with this in mind.

The Rare Disease Interest Group (RareDIG) at GUSOM aims to increase awareness of rare diseases as a whole through medical student education, patient advocacy and empowerment, and interdisciplinary research. Our goal is to inspire and shape rising generations of physicians by encouraging discussion in medical curricula around rare diseases to bring attention to affected individuals and families on a national and global scale. We intend to learn from and advocate for affected individuals with the goals of addressing health inequities in care and empowering patients with tools to vocalize and advance their care goals. Finally, we plan to collaborate with our colleagues and partner organizations to deliver educational events and drive essential research in an effort to identify and bridge gaps in our knowledge of rare diseases.

The Penn Medicine Rare Disease Interest Group’s aim is to create a community in which medical students can learn about and and advocate on behalf of those who suffer from rare diseases. Given the collective burden imposed by rare diseases, we believe medical students should be prepared to treat these patients in adult and pediatric realms. We believe that we can achieve this goal of having a cohort of medical trainees who are better-versed in the biology and clinical management of rare disease is to actively engage them in ongoing and cutting-edge research in the field.

We seek to accomplish this through the following three arms:

(1) Developing a Rare Disease Curriculum - our group has created a preclinical elective, titled “Thinking Zebras when Hearing Hoofbeats: Engaging Rare Disease” that allows students to complement their medical training with speaker events focused on rare disease. These include didactic sessions led by physicians and scientists, patient panels, and career discussions that expose students to careers in rare disease research and clinical practice.

(2) Building an On-Campus Framework for Rare Disease Care - in collaboration with the Orphan Diseases Center, our group is developing a database of physicians and researchers with a focus on rare disease. The goal is to provide a tool for patients with rare disease that they may use to identify researchers and practitioners with relevant expertise.

(3) Direct Patient Outreach - our group, in collaboration with the KIF1A.ORG community, is developing a series of educational videos to provide patients insight into new developments in the field. In parallel, we are performing a needs-assessment survey of rare disease communities to identify common needs identified by patients and families experiencing vastly different diagnoses.