The European Haemophilia Consortium (EHC) has launched a call for volunteers to join its newly established Committee for Women and Bleeding Disorders.
The EHC Women and Bleeding Disorders Committee has been established to create awareness, recognition, support and education about, and for, women in the bleeding disorder community at European level. The committee will provide advice to EHC members, volunteers and staff in matters concerning women with bleeding disorders.
The EHC is currently looking for six candidates with the following profiles to join its committee:
- Two women with bleeding disorders caused by factor deficiency (e.g. von Willebrand, haemophilia or any other rare factor deficiency) who experience moderate to severe bleeds,
- One woman with a bleeding disorder caused by a factor deficiency who does not experience bleeding symptoms,
- One woman with platelet disorders,
- One parent of a girl with a bleeding disorder,
- One volunteer working on women’s issues in one of the EHC National Member Organisations (NMOs).
Candidates interested in applying to join the committee should send their CV, letter of motivation and a recommendation from the President of one of the EHC NMOs to Saskia Pfeyffer ([email protected]) by 19 November 2017 the latest. Only complete applications will be considered.
Prior to applications candidates are advised to consult the Terms of Reference of the EHC Women and Bleeding Disorders Committee to learn more about the work of this committee.
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.
