The European Haemophilia Consortium (EHC) has published its December 2016 Newsletter.
In this issue:
Pg 02: President and CEO Report
EHC News
Pg 05: Comprehensive care in haemophilia: Hepatology
Pg 08: EHC Annual Conference
Pg 11: EHC Workshop on Tenders and Procurement
Pg 13: EHC Workshop on New Technologies in Haemophilia Care
Pg 16: EHC Inhibitor Summit
Pg 18: Round-up of EHC Round Tables of Stakeholders
Pg 20: Meet the newly elected EHC Steering Committee
Pg 22: Meet the EHC Russian interpreters: Olga Miniuk and Julia Krivkina
NMO News
Pg 25: NMO profile: Macedonia
Pg 28: News from Albania: Improving treatment through international cooperation
Pg 29: Bloodrelatives: The end of a journey leading to the beginning of an adventure
Pg 31: International Basketball Camp for People with Haemophilia 2016
Pg 35: German NMO elects a new president: Meet Stefanie Oestreicher
Pg 36: Changes within the EHC Swedish National Member Organisation
Feature Articles
Pg 39: Researcher spotlight: Dr Karen Vanhoorelbeke
Pg 41: Results of patient survey on EHL expectations in the DACH region
News from our corporate partners
Pg 47: Novo Nordisk
Pg 49: We are Roche
Pg 51: Shire
Pg 52: Third EHC Youth Debate (Sobi)
Pg 54: Haemophilia Lead (Bayer)
Pg 55: CSL Behring’s workshop at the EHC Annual Conference
Pg 56: Changing the conversation (Grifols)
Pg 57: Calendar of events
Announcements
Pg 58: Invitation to contribute to survey on chronic pain and adherence
Pg 59: New book on ‘Sexuality and Bleeding disorders’
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.
