It’s appropriate that the Youth Leadership Workshop concluded on World Health Day (April 7). Healthcare is a universal right and EHC is part of the global effort to ensure that all patients, regardless of their nationality, economic background or health status, receive the care they deserve. The Youth Leadership Workshop aims to train the next generation of volunteers and leaders of the European haemophilia community. The future leaders of our community gathered together in Amsterdam on April 5 – 7 to gain tools and information which we hope will help to encourage greater participation in their NMOs and their community. Representatives from Albania, Austria, Bulgaria, Croatia, France, Kyrgyzstan, Northern Ireland, North Macedonia, Romania, Serbia and the United Kingdom, all aged under 30, who have made the decision to be advocates and continue their lifelong process of developing and fine-tuning advocacy skills. Kyrgyzstan’s Aizat Aidarbekova, who resides in Kyrgyzstan, but is also part of the international Korean community, said, “This work goes beyond borders. I came to Amsterdam to learn as much as I can. I’ve listened to other peoples’ experience with their care when they younger. This information has been invaluable when sometimes it’s difficult to get information inside your country.”
Led by EHC’s Community Programmes Officer Fiona Brennan, the 2019 Youth Leadership Workshop is a vital component of EHC’s aim to empower and build young advocates and leaders in our community. After a group introduction and agreement session led by EHC Youth Ambassadors Valentin Brabete from Romania and Stefan Radovanovic from Serbia, EHC CEO Amanda Bok talked about our collective community and our patients and NMOs representing the voice of over 90,000 patients in Europe. Amanda also talked about patient centricity and how patients should not only be part of this sometimes abstract concept, but steer it through governance and participation. The main focus of the first day of the workshop was governance – governance enables our community to be credible and credibility is key and maintaining constructive and positive relationships with industry, regulatory institutions, national patient organisations, health care providers and other patient organisations which reflects our unity. Austria’s Christian Berner said, “We are fighting together for a better future. I can go back to my NMO with a better understanding and stronger international network.” Advocacy is about lifetime participation, accountability, transparency and inclusion. While we may have disagreements, advocacy is about unity and agreement. Youth Committee Clive Smith, Steering Committee Olivia Romero Lux, Youth Ambassador Stefan Radovanovic and Fiona Brennan led an open and honest discussion about advocacy, empowerment, and good NMO governance, followed by breaking into group and strategic planning.
Saturday’s sessions were heavily participant-focused with active group work and feedback. Fiona led a session on engaging and retaining volunteers, followed by Clive who discussed the importance of successful youth engagement through project planning. Both sessions used real-world case studies and situations that the participants might encounter at their NMOs. As always, the role-playing sessions were lively, particularly for women with bleeding disorders, an often-overlooked group of our community. Our community is much greater than the sum of our borders and our genders. Macedonia’s Marija Aloa Vera Drzmanoska, who has created a public-awareness art campaign in North Macedonia, said, “For me, these programmes raise awareness on all parts of our community, including women. That I am able to support my friends and community is the best part of this weekend.”
Steering Committee Olivia Romero Lux conducted an in-depth and exhaustive discussion on the process of medicines from discovery to market authorisation. This session was complimented by interactive discussions on patient engagement with external sessions and the role of patients, regulators and industry. The second day of the workshop concluded with a moderated discussion with representatives of the pharmaceutical industry.
On Sunday, Clive opened the morning with an interactive discussion about strategic planning. Fiona, Valentin, Stefan and Charles Kinney led ambassador exercises, where teams found real-world solutions to four possible challenges in NMOs. Finally, we concluded with more role-playing about volunteering and engagement. Northern Ireland’s William McKeown said, “This workshop was on-the-button for relevancy. For any aspiring leader, the workshop was not only well-presented but full of ideas. My expectations were surpassed.” There were several recurring themes over the course of the workshop namely the importance of good governance and the principles that guide good governance, the importance and inclusion of all stakeholders and decision-makers in the collective focus of the patient organisation and how to work effectively with these stakeholders to ensure a collective, cohesive and inclusive organisation for patients now and into the future.
We would like to thank this year’s youth participants for their motivation, enthusiasm and engagement – the future of our NMOs in Europe is bright. For more information on youth related activities please see our newly rebuilt Youth section.
The Youth Leadership Workshop was sponsored by BioMarin, CSL Behring and Takeda.