Stephanie Alband is the Executive Director of Pheo Para Alliance and a participant in the INCA Boot Camp for Research Patient Advocates.
Why did you enroll in the INCA Boot Camp?
My personal and professional experience hadn’t offered me an opportunity to serve as a patient advocate in research, so for me, this course was timely. I knew I had a steep learning curve. On a macro level, in the past, there was some focus on patient advocates engaging in research, but it was murky as to exactly how small, rare disease organizations should do this. The Boot Camp provides us with practical tools to facilitate research in our patient community.
Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?
Specifically, for pheochromocytoma and paraganglioma, we have a tremendously passionate community yearning for answers. To make any significant progress in research for pheo para and NET research, collaboration amongst all stakeholders needs to happen. Patients and caregivers driving research and raising awareness and funds, and researchers who are willing to work with a passionate patient community. Also, being part of a community like INCA and connecting with other NET organizations has made Pheo Para Alliance feel very supported.
The most important thing you learned from the respective monthly webinar?
For me, the program has reinforced that the patient perspective is imperative in advancing research and improving clinical care. Fortunately, the traditional patient-doctor hierarchy is slowly dissolving, and it provides benefits to both. Researchers and clinicians can now acknowledge that they don’t have all the answers, and patients and caregivers are finally provided the opportunity to help fill in the missing pieces of the puzzle.