The European Haemophilia Consortium (EHC) is launching today, 18 October 2019, a call for volunteers to join its Women and Bleeding Disorders (WBD) Committee and its Inhibitor Working Group (IWG). Volunteers will be expected to start in January 2020 for three years (until end 2022).
These committees have been established to create awareness, recognition, support and education about, and for, women with bleeding disorders and people with bleeding disorders suffering from inhibitors, respectively. These committees will help EHC develop strategies and activities to achieve these goals.
The ideal candidates will have prior experience either within their national member organisation or at an international level. They will also need to express their commitment to the activities of these committees for the entire duration of their mandate. The working language of these groups is English.
To apply candidates will need to submit their CVs, a letter of motivation and a letter of recommendation from the President of their affiliated National Member Organisation (NMO) by 24 November 2019 midnight (CET). The applications will be reviewed by the EHC Steering Committee in early December and applicants should expect to be contacted by mid-December with final decisions on the selection process.
For any further information on these applications, please get in touch with Laura Savini regarding applications for the WBD Committee and Kristine Jansone for the IWG.
Consult the Inhibitor Working Group Terms of Reference and read the application form call.
Consult the Women and Bleeding Disorders Committee Terms of Reference and read the call for volunteers.
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.
