Mari Sandvold is the Administrative Manager at CarciNor Norway and INCA Boot Camp trainee
Why did you enroll in the INCA Boot Camp?
I enrolled in the INCA Boot Camp to better understand how to work more efficiently when it comes to lobbying and discussing with decision makers. To have dedicated patient advocate experts like Tamás Bereczky and Jan Geissler (both from Patvocates) teaching us, is truly valuable and not least inspiring!
My mother died of neuroendocrine cancer in 2013, and working as a patient advocate became the obvious choice for me. I want to help raise awareness about a little known cancer diagnosis, both among patients and caregivers, and among health professionals in primary care. As part of NET Cancer Day 2020, CarciNor is arranging «Sebraløpet», a virtual race for the first time ever. I am proud to be involved in a project that will help raise NET cancer awareness among the general public as well: https://bit.ly/343E27B
Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?
The board members of CarciNor are great partners in supporting me in my work. We recently started to look at how we can increase the focus on clinical studies in Norway, and how to better organize to make it easier for Norwegian patients to participate in clinical studies on NET cancer. I have also learned a lot about active patient involvement in cancer research from both the Norwegian Melanoma Association and Melanoma Patients Network Europe.
The most important thing you learned from the respective monthly webinar?
This INCA Boot Camp gives me useful and valuable insight in how to be a better patient advocate. What I really treasure is the opportunity to discuss with fellow NET-advocates around the world: To learn from each other, get ideas, and to find out how we can work together to solve common challenges. Collaboration across patient associations, both national and international, benefits us all. I am grateful to be part of this INCA Boot Camp!