The EHC works hard to invest in patient advocacy and developing leadership skills for the future. For this reason we have built a comprehensive youth leadership strategy which actively encourages and includes the training and participation of young members of our community throughout EHC programmes and events. As part of this strategy, we are delighted to announce our first Youth Fellowship Project!
The first Youth Fellowship Project will be organised by three of our Youth Alumni from Hungary, Ireland and Serbia. The purpose of this project is to encourage our youth to get involved in their National Member Organisation (NMO), not just in camps and activities, but in the governance of the NMO and in the decision-making process. The team will also focus on the benefits of working together with other NMOs and stakeholders at a European level.
The Youth Fellowship Project team, comprised of Karola Diosi, Donal Mc Cann and Nikola Kumovic acknowledged that, as a community, we need to encourage our youth to expand their view of the NMO from a two-dimensional approach. The team aims to empower and encourage the youth to be involved in their NMO at an organisational and at board level, where they can shape the future direction of the NMO, while also educating their peers on the importance of collaboration at a European level. The team focuses on highlighting that in a rare disease community, it is vital to create European wide engagement, friendships and professional relationships to encourage active participation in NMOs at a European level.
The team is planning to visit each of the three NMOs to attend a planned event, where they will be offered a space to facilitate an interactive workshop. They will actively encourage and challenge the youth and members of the NMO, to expand their focus and understand the importance of youth collaboration for the future strength of the NMO. The project will take place throughout 2019. We are excited to see the results and impact of this worthwhile project and wish the project team the best of luck and thank them for their motivation and collaboration!
More about the Youth Fellowship Programme
In case you haven’t heard about the Youth Fellowship Programme, the programme was launched in late 2018 and is aimed to build on EHC’s Youth Strategy. Through the Youth Fellowship Programme, we hope to maintain & grow the active engagement of our youth community with each other and with our broader community across borders.
In this way, we see our young leaders developing real hands-on experience and at the same time contributing in the right way to the European community. The Youth Fellowship Programme will facilitate the creation of project teams, comprised of young EHC event alumni, aged between 25-35, who will take the lead on key projects and areas of work that are necessary at cross-national or European levels.
The projects will work towards a concrete outcome and benefit more than one country. Importantly the projects will not over-lap with existing work being done in the European patient community. We will also seek the approval of the respective patient organisations in order to ensure that our work compliments work being carried out in the community.
The EHC have established an online roster of one-two year projects which is available to view here. Any community member can propose projects to add to the roster at any time, which the EHC Steering Committee will review and approve on a rolling basis and we will continue to announce new projects on our website.
For further information on the Youth Fellowship Programme, the application process or indeed for any queries please contact Fiona Brennan or see our FAQ!
We look forward to working with our future community leaders on these projects!
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
