The EHC December 2017 Newsletter is now out and can be accessed through the link below. This will be the last issue in its current form – from 2018, we welcome a more dynamic, interactive and reader-friendly format!
Table of Contents:
Pg. 3: President and CEO Report
Pg. 6: EHC News
Pg. 6: Comprehensive care in haemophilia: pain management
Pg. 9: Tenders and Procurement Workshop: bringing the haemophilia voice into the purchasing
process of treatment product
Pg. 11: European Inhibitor Network Pilot Workshop 2017
Pg. 13: 2017 EHC Conference
Pg. 19: Exploring the Horizon with the ‘New Technologies in Haemophilia’ Workshop
Pg. 21: Round Table on Clinical Trials on the Usage and Measurement of Extended Half-Life
Coagulation Factors and Non-Substitutional Therapies
Pg. 23: PARTNERS: Lift off and aiming high for 2018
Pg. 29: Meet the EHC Medical and Scientific Advisory Group
Pg. 34: Council of Europe updates recommendations on haemophilia care in Europe
Pg. 35: NMO News
Pg. 35: Meet Marko Marinic, the new president of the Croatian NMO
Pg. 38: New president of the Czech NMO
Pg. 40: Activity Grant Report: International basketball camp for people with haemophilia 2017
Pg. 42: Analysis of medical and social surveys of patients with haemophilia: setting the strategy
for the next five years
Pg. 44: In Loving Memory of Vladimir Ilijin
Pg. 46: Feature Articles
Pg. 46: Researcher Spotlight: Dr Mehdi Osooli
Pg. 49: The European Pillar of Social Rights: what you need to know
Pg. 51: Voluntary frameworks: a realistic solution to increasing access for haemophilia patients?
Pg. 55: Mindfulness
Pg. 58: News from our Corporate Sponsors
Pg. 71: Announcements
Pg. 72: EHC 2018 calendar of events
Pg. 73: Other events
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.
