Fabienne Pfyffer, Secretary of the Victory NET Foundation, Switzerland and participant in the #INCABootCamp

Why did you enroll in the INCA Boot Camp?

My skills and experience in relation to patient advocacy are very limited and this is why I enrolled in the INCA Boot Camp. To this day our Foundation mostly supported research (the AdVince trial with Prof. Öberg and Prof. Essand in Uppsala, Sweden and Prof. Lauer in Tübingen), organised training for specialized NET patient nurses and translated the excellent NPF handbook in German and French.  We are now seeking to implement in-person patient group meetings and platform with the support of Olivia Messerli, head NET nurse at the CHUV in Lausanne. She recruited patients who are interested and motivated in leading such meetings and we held our first organizational meeting in October 2020.  We at VNF aim to develop our capacity to become a more effective patient advocate and be more active on multiple levels.   

Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?

Being able to join INCA has been a huge step for us, we enjoy the knowledge and experience of all.  Thanks to INCA we participated to the intensive WECAN Academy (Smart Start in Patient Advocacy) in Frankfurt where cancer patient advocates from 26 European countries spent four days at the first training course developed and run by advocates in July 2019.  And we realized how much we still have to learn.

And in addition to the support of the CHUV in Lausanne, we should also mention the Uppsala University in Sweden and the University of Tübingen in Germany.

The most important thing you learned from INCA Boot Camp webinars?

I have been impressed by the involvement and dedication of the Boot Camp participants and our instructors.  I was at ease with the training about how medicines development work since it has been one of our main focus so far and much appreciated the course about PRO and QoL measurements.