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Young Patient Advocates learning about the Virtues of Leadership

©EPF

The 1st edition of EPFs Summer Training Leadership Programme for Young Patient Advocates took place in the surroundings of beautiful Vienna, Austria. From the 3rd to 5th of July, 39 young people got together to share experiences and learn about leadership skills. With one objective: preparing the future generation of patient advocates!

It was passion and commitment towards patient advocacy that brought young people from 19 different European countries together. The objectives of this first edition were ambitious: learning more about human rights and discrimination with a view to becoming leaders that inspire and help other young people with chronic conditions. Over the course of three days, speakers and trainers from various fields and disciplines shared their expertise, knowledge, their tips and experience to give participants a better picture of the potential challenges, and opportunities faced by patient advocates.

Dan Moxon and Ed Moss from “People Dialogue and Change” led and carried out group exercises covering leadership skills: from scoring one’s management personality to learning techniques to set goals for an organisation, and elaborating elevator pitches.

Human Rights and Discrimination at the Centre of the Stage

Fighting stigma and discrimination was one of the focus of the training. In a session introducing a general outline of the European Convention of Human Rights, the group discussed the different types of discrimination and how to best challenge them at the European level.  

EPF’s Policy Advisor Katie Gallagher then explained how young advocates can best make the case for patient rights in the current EU context, while Patrycja Pogodzinska from the European Agency for Fundamental Rights provided some insight into research carried out on discrimination faced by minority or marginalised groups in Europe when accessing healthcare.

Participants also had the opportunity to hear Nancy J. Altman, a lawyer and social security expert based in the US, who provided examples of how social and political changes can be promoted. Ms Altman also shed a light on the situation surrounding the American healthcare system and measures taken to make healthcare coverage as broad and accessible as possible.  

Invited as an expert patient, Tamas Bereczky, an HIV patient advocate and EUPATI Trainer from Hungary, spoke about what constitutes stigma against patients with certain long-term diseases or from certain minority groups to explain how or why other forms of societal discrimination exist.  

EPF Youth Group members who helped shape the programme obviously played a major role in the event: Polis Stavrou and Andreas Christodoulou contributed with a session on the group’s activities and major achievements. Valentina Strammiello, EPF’s Programme Manager, delivered a presentation about the European Health Parliament and encouraged the audience to apply for the initiative’s third edition, contributing with the young patients’ perspective.

Last but not least, Simon Stones, a health activist and researcher from the UK gave an inspiring talk about the journey that led him to becoming a patient advocate with some final words of advice: “to stand by the values you hold in your work, to not be afraid or let setbacks keep you back and to be true to yourself”.

The intense programme of the Summer Training Course, coupling interventions from experts with the very practical workshops, certainly has the potential to help young patient advocates in their journey towards better and more impactful patient advocacy. Judging from the very positive feedback, the first edition of this new EPF programme was a success and helped strengthening the bonds within this very unique, motivated and inspiring community of young patient advocates!