We continue our Emerging Researchers series with an interview with Robin Powers, a student just starting her master’s degree work. 

Robin is an enigma. She has a wealth of energy and a very fast-moving mind. She has dreams and aspirations that will change the world.  Yet she has yet to find the right experiences and coaches to refine her approach. She most certainly has not come from a place of privilege.

Robin is a patient who has been managing and advocating for her own Ehlers-Danlos Syndrome for 17 years now, including identifying the issue and securing the genetic testing required to confirm the diagnosis. She has presented at conferences, been a PCORI Ambassador, and volunteered with other rare disease organizations.  She has done all this independently without the luxury of programs or an organization paving the way.

Robin talks about how she came to Buffalo State College and designed her own degree program, Biochemical Pharmacology of Rare Diseases. She also discusses her work to earn a degree in patient advocacy and public policy. 

The goal of our Emerging Researchers series is to highlight people like Robin who are full of potential but lacking the experience our other guests may have. These younger people have fresh ideas and the freedom to be bold. For Robin, her life depends on it.