What is the Youth Fellowship Programme?
The EHC Youth Fellowship Programme provides a way to give the young leaders in our community real hands-on experience and at the same time to allow them to contribute constructively to our European community. The Youth Fellowship Programme will enable a pool of young project teams to take the lead on key projects and areas of work that are necessary at cross-national or European levels. The project teams will be comprised of up to four young EHC event alumni, from at least two different countries.
Why is this an important part of the EHC’s Youth Strategy?
The EHC strive to engage, develop and encourage members within our community to become leaders and active voices within their community. The Youth Fellowship Programme will encourage our already enthusiastic youth to:
• Maintain and increase their interaction and engagement with each other and with our community across borders
• Encourage and foster cross-border communication and support culminating in a concrete and useful goal
• Allow them to develop their own area of work or pick up one proposed by the EHC
How do I get involved?
Firstly, to be eligible to take part in the Youth Fellowship Programme you must be aged between 25 – 35 years and you must have attended an EHC event. Preferably, applicants will have attended our Youth Leadership Workshop (but other EHC events are valid as well). As the projects are cross-national in scope it is a requirement that applicants must speak English.
All applicants will be required to submit an application form. The application form will require details on your involvement with your patient organisation, your involvement with the EHC and your proposed project. The proposal can be based on an already suggested project which is available on our website or you may suggest your own project. To discuss the application process, the list of projects or for any questions regarding this process, please contact Fiona Brennan.
What types of projects are envisioned?
The EHC have a list of one-to-year projects available on our website that we encourage our applicants to explore and use. However, any community member can propose projects to add to this roster, which the EHC Steering Committee will review and approve on a rolling basis and announce on our website. Project teams may also propose their own project to the Steering Committee, which would be reviewed and approved as appropriate.
Please remember – projects need to be cross-national in scope, work towards a concrete outcome, and benefit more than just one country.
I would really like to get involved, but I do not know anyone from another patient organisation to create a project team.
One of the aims of the Youth Fellowship Programme is to enable cross-national communication and interaction – if you do not know other young EHC event alumni from other countries but would like to get involved in a Youth Fellowship project, please contact Fiona Brennan ([email protected]). We will be delighted to facilitate and help youth alumni create contacts and teams where possible.
Is there a timeframe for the completion of a project?
The projects will be required to have a definitive end date – all projects should be fully completed in no longer than 1 – 2 years.
I have not managed a project before, what support will be offered by the EHC?
A dedicated EHC staff person will support the project team and project work. The staff person will provide tailored support to project teams to meet their needs, as relevant. This can include, for example, proposing management tools, arranging briefing-, progress- and debriefing meetings and jointly address any issues that come up, amongst others. However, the EHC will only provide a supportive structure, a proposed framework for guidance, advice if needed and general oversight. Project teams are invited to develop their own project plans, timelines, budget proposals, and roles and responsibilities, and to exercise the right balance of their own initiative and freedom. The budget will be managed by the project team but controlled by the EHC.
Should I inform my patient organisation of my intent to be involved in the Youth Fellowship Programme?
Yes! The EHC will require, as part of the application process, that you inform and receive the support of your Patient Organisation’s president. The President will need to approve your involvement by signing the application form that is submitted to the EHC. This is to ensure that the project compliments the work of your patient organisation and that your president can support your active involvement with the EHC and the wider community where appropriate!
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.
