From April 6-8 2018, the European Haemophilia Consortium (EHC) will hold its fifth Youth Leadership Workshop in Amsterdam, Netherlands.
The workshop aims to train the next generation of volunteers and leaders of the European haemophilia community. The event programme consists of a mix of lectures, hands-on exercises and sharing of experiences and best practices from more mature volunteers. The objective is to sensitize young people to the importance of being active in their respective National Member Organisation (NMO) and to prepare them for potential issues that they may be facing in their volunteering life.
When: April 6-8, 2018
Where: Amsterdam, Netherlands
Programme: You can consult a draft agenda here
To apply: Please contact your NMO, who can then nominate participants for the EHC Youth Leadership Workshop. The workshop is intended to be beneficial both to the participants as well as to the nominating NMOs by supporting the growth and development of NMOs’ volunteer communities. Therefore, we ask NMOs to only nominate candidates who meet the following criteria:
- Is a patient with, or carrier of, haemophilia, VWD or another rare bleeding disorder;
- Is between 21-30 years old;
- Has at least one-year demonstrated existing or prior commitment to the NMO;
- Is fluent in written and spoken English and can actively engage in the interactive training of the workshop;
- Will actively participate in the training and any requested follow-up activity or reporting;
Has capacity to stay actively involved or become further engaged with your NMO, as well as ability to engage other youth.
There is no limit to the number of nominations each NMO can submit. However, there are only 16 slots available in the workshop.
Deadline to apply by: January 31st, 2018 – extension is possible, please get in touch with [email protected].
EHC Youth Leadership Workshop 2017
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.
