ESP Biography

Every patient deserves answers—but what happens when there are none? In this course, you’ll step into the shoes of doctors, scientists, and families working to solve some of medicine’s rarest and most mysterious conditions. Through real-life case studies, hands-on activities, and patient stories, you’ll learn how rare diseases are discovered, diagnosed, and researched—and how people around the world are working to turn these mysteries into hope. We’ll explore the science of rare diseases, the detective work behind genetic diagnosis, and the power of advocacy in driving new treatments. Come curious and leave inspired—you might even help write the next chapter in rare disease research someday. Topics Covered: The genetics of rare diseases Diagnostic odysseys and the role of “medical detectives” The NIH’s Undiagnosed Diseases Program Patient perspectives and advocacy Drug development and clinical trials for small populations Health equity and the global impact of rare diseases

Curious about how students your age get involved in real research? Whether you’re interested in medicine, biology, or technology, this workshop will show you how to turn curiosity into discovery. In this interactive session, you’ll learn how to find research opportunities, reach out to professors, and make the most of your experiences in a lab or independent project. We’ll also practice how to read and understand scientific papers—even if you’ve never seen one before! You’ll leave with practical steps, example emails, and resources to help you start your research journey, plus a look at how students are making a real difference in rare disease research and beyond. Topics Covered: How research really works (from hypothesis to publication) Finding mentors and writing effective outreach emails How to read and analyze a scientific paper Understanding ethics, collaboration, and the impact of research Stories of students contributing to rare disease and biomedical research