EHC Newsletter – December 2014
In this issue:
Message from the President and the CEO
pg 02 – Joint Message from the President and the CEO
EHC News
pg 06 – EHC 2014 Conference in Belfast, Northern Ireland, UK
pg 07 – Invitation to join the 2015 EHC Conference in Belgrade
pg 08 – 25 Years of EHC: An interview with the next generation
pg 12 – Report on the EHC Workshop on Economics and Health Technology Assessments
pg 14 – Report on the EHC New Technologies Workshop
pg 18 – EHC Round Table on National Haemophilia Councils: From concept to reality
NMO News
pg 22 – EHC welcomes 45th member: Kyrgyz Haemophilia Association
pg 23 – Greek Haemophilia Society elects new President
pg 24 – The reality for haemophilia patients in Cyprus and the role of the Pancyprian NMO
pg 25 – Conference for the future of Hungarian haemophilia care
pg 28 – Nordic Meeting in Copenhagen
pg 30 – One year on barricades for improvement of haemophilia care in Romania
pg 32 – International children’s summer camp “Barsukas” Lithuania celebrates its 5th anniversary
pg 34 – Recent Publications of the Polish Haemophilia Society
Feature Articles
pg 37 – Report on the conference: ‘HTA 2.0 – teaming up for value’
pg 40 – Ensuring efficiency in haemophilia factor concentrates: “First, do no harm”
pg 43 – ELPA ‘HCV and Your Body’ International Training Day
News from the Corporate Partners
pg 44 – Advancing to a new era of personalised care
pg 45 – CSL Behring continues to advance new approaches to coagulation therapy
pg 46 – Pfizer launches Miles for Haemophilia in Barcelona and Belfast
pg 48 – European Haemophilia Recommendations: A debate with a new generation, a report from the event
pg 50 – Bayer: Building the Future on a Solid Foundation of Investement in Europe
pg 51 – Novo Nordisk is committed to Changing Possibilities in Haemophilia
Announcements
pg 52 – EHC 2015 Calendar of Events
pg 52 – Other Events
pg 54 – Social Media and the EHC
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.
