Capacity building training

for MPS patient advocates

Report of the July 2019 Meeting

​Capacity building training for MPS patient advocates was held in Belgrade, Serbia on 3rd and 4th July 2019. 20 MPS patient advocates representing national MPS societies and adult MPS patients from 12 European and one country from Africa participated.

​Local PR & Media agency, AS communications, highly specialized in healthcare and rare diseases performed the training. Team of trainers consisted of PR expert, communicologist, actor, psychotherapist and medical journalist. Training was in English.

The aim of this training was to empower participants to use proper communication skills with verbal and non-verbal communication techniques. Trainees were educated on what are the elements of successful public speaking and proper use of voice and speech, how to give effective presentation within a given time frame, how to deal with stage fright. They were taught how to overcome fear of mistake and self-acceptance in public speaking. Special focus was on fear, shame and stigma where participants were actively involved.

​The objective of media training was how to improve patient organizations’ understanding of how to get positive and productive media coverage of an advocacy initiative/campaign and empower patient organisations to learn how to interact with media using practical exercises. In this training participants learned from a medical journalist from National television how to create a win-win scenario with media and understand what needs to be in place to support media activity. First part was interactive presentation on how to engage effectively with media, including: What makes a good story, how the media agenda differs from your own, requirements of different media, the importance of preparation and techniques for controlling the interview. In the second part participants were interviewed in front of the camera followed by analysis and evaluation of recorded materials.