In this edition:
Message from the President and the CEO
pg 02 – Joint Message from the President and the CEO
EHC News
pg 06 – EMA Human Scientific Committees’ Working Party with Patients’ and Consumers’ Organisations (PCWP) meeting
pg 07 – Celebrating 25 years of EHC: the origins of the EHC
pg 11 – EHC Round Table: “Orphan Drugs and Rare Bleeding Disorders”
pg 13 – EHC Structure: Overview of the new Steering Committee, Medical Advisory Group and Committees
pg 15 – EHC STRATEGIC PLAN 2014-2017
NMO News
pg 17 – Dutch Haemophilia Society elects new chairman
pg 18 – Belgian NMO elects new President
pg 19 – Interview with Liz Carroll, CEO UK Haemophilia Society
pg 20 – Focus on EHC NMOs: Austrian Haemophilia Society Profile
Feature Articles
pg 23 – Standardisation of haemophilia care in the Netherlands
pg 26 – Patient Involvement in Health Technology Assessments…
pg 30 – EHC to become member of the European Patients’ Forum
pg 31 – Patients Vote for a Healthier Europe
pg 35 – A novel approach to haemophilia therapy
pg 36 – EHC – EAHAD Memorandum of Understanding
pg 37 – EUHANET Haemophilia Centre Locator
pg 40 – Rough Guide to Haemophilia Central
pg 42 – Inspirational Story: Russian NMO member competes in powerlifting
Announcements
pg 43 – Announcements
pg 43 – Social media and EHC
pg 43 – Announcement from the French Haemophilia Society
pg 44 – 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.
