The European Haemophilia Consortium (EHC) is looking for two youth volunteers and one advisor to join its Youth Committee for the period 2016-2018 to help develop the programme of the EHC Youth Leadership Workshop and to support the EHC youth-related activities.
The ideal youth candidate will be:
- An active member an EHC National Member Organisation (NMO) with at least three years of active volunteering,
- Either a patient or carrier of one of the bleeding disorders covered by the EHC mandate (e.g. haemophilia, von Willebrand Disease or a rare bleeding disorder) OR the sibling or the child of a person with a bleeding disorder covered by the EHC mandate,
- Between 21 and 30 years of age at the time of application/ election,
- Fluent in English,
- Committed to dedicate enough time to actively and constructively participate in the Youth Committee’s activities (an average of ½ day per month and a full weekend per year; although this may vary, particularly closer to the Youth Leadership Workshop) for the duration of the mandate,
- Be open to potentially participate and travel to other EHC events (such as the EHC Annual Conference) and other events organised by EHC partners,
The advisor will have a similar profile to the one of the youth volunteers with the exception that he or she will be 31 or older at the time of application/ election. The ideal advisor will have a demonstrated interest and experience in youth-related activities.
To apply for this position, candidates will need to send:
- The candidate’s CV,
- A motivation letter outlining briefly their background and why they are interested in joining the EHC Youth Committee,
- A letter of recommendation from the NMO President outlining why they believe the candidate would make a great addition to the EHC Youth Committee.
Applications should be sent to laura.savini@ehc.eu by 30 October 2015 the latest.
Here you can consult the Terms of Reference (ToR) of the EHC Youth Committee with additional information on its work and composition. The candidates will be reviewed and selected by the current EHC Youth Committee based on the criteria outlined above. Selected candidates will need to be available for a first conference call in November/December to start the planning of the next EHC Youth Leadership Workshop.
For any question about this call for candidature, please contact the EHC office.
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.
