Rare Diseases: What It Takes To Be a Medical Orphan
Dr. Reena Kartha will be teaching a first-of-its-kind Freshman Seminar course on Rare Diseases: What It Takes To Be a Medical Orphan this Fall. The course was accepted into the University of Minnesota’s Grand Challenge Curriculum and will consist of weekly seminars and readings on topics related to the understanding of rare diseases and the economics, regulatory and public policy aspects of development of drugs (orphan products).
Q&A with Dr. Kartha about the course
Q: Where did the idea to create the course come from?
A: Throughout my career in the rare disease field, I’ve been struck by the interesting ways students become connected to the rare disease field. For most of them, it was through something they encountered during rotations or residency, a difficult case or challenging diagnosis, that led them to think about learning more about rare diseases. It could also have been a genetics class that touched on inherited disorders or they just happened to have a teacher along the way that shared their own interest in the field. Because there aren’t any specific opportunities to learn about rare diseases, I thought that maybe by having a discussion oriented course during the undergraduate years would be a good forum for students to learn about rare diseases and the challenges associated with them so that even if they were to pursue a career in business, for example, they will remember what they learned or what we discussed in class and apply it to benefit the rare community.
Q: When you envision the course, what does the format look like? And, how will you make that work in the COVID-19 era?
A: This is a freshman seminar and I want to involve a lot of the community, both from within and out of the University. Now that we need to meet virtually, I will be hosting live discussions with our guests so that the interaction can still occur as opposed to offering pre-recorded presentations. Each class will begin with a brief introduction of our speaker, followed by a 40-45 minute presentation, with the remaining 20 minutes being spent as an open discussion. If possible, I would like to invite the speaker back the following week in order to delve even deeper into the given topic. All of this, however, will depend on the makeup of students within the class and their particular interests. I’m really curious to see how the diversity in the class will affect the discussions.
Q: What are your goals for the course?
A: My main goal is to break the class up into four groups and have each group identify a challenge that the rare community is facing and to then come up with possible solutions. Before this was going to be a virtual class, I was hoping to have them work one-on-one with patient advocacy groups, but I’ll still find a way for them to engage with the community during this project. By the end of the course, my hope is that at least one of the students will go on into the rare disease field.
Q: What sorts of challenges might you face toward achieving those goals?
A: It might be difficult to retain attention and engagement through an entirely online course. I may bring in mentors, faculty in the field other than myself, to either keep their projects moving along or to moderator discussions. I’m also going to be asking speakers to use all tools possible - live polls, Q&A’s, etc - to keep the engagement level high.
Q: Why do you think it's important for rare diseases and orphan drugs to be part of a students' education?
A: I’ve learned that the rare disease field is a multi-faceted and highly interdisciplinary area. There are so many options for the students who learn about the area which has lessons that can be applied to a broader scenario, whether it is drug pricing, ethical issues, policy or research. Because it is a smaller audience and you could be working with smaller groups of people, there is greater accountability, everybody wants to do their best, communication is important, and everyone feels involved. I feel like that will make them more committed to whatever their profession may be and they will take the lessons learned later into other fields, but also increase awareness about rare diseases.
Answers have been edited for length and clarity.