The August Newsletter of the EHC Newsletter is now available!
In this issue:
President and CEO Report
Pg 03 – President and CEO Report
EHC News
Pg 06 – Comprehensive Care in Haemophilia: Psychosocial Support
Pg 08 – Young volunteers meet in Rome for the second edition of the EHC Youth Workshop
Pg 11 – EHC Round Table Report
Pg 15 – Meet Kristine Jansone, EHC’s new European Inhibitor Network Programme Officer
NMO News
Pg 17 – NMO Profile: Azerbaijan from 1999 to today
Pg 21 – Hungarian NMO elects new board
Pg 23 – Meet Lino Hostettler, newly elected President of the Swiss NMO
Pg 23 – World Haemophilia Day in Lithuania – First-ever basketball team of haemophiliacs
Pg 26 – Regional Haemophilia Symposium in Turkey
Feature Articles
Pg 28 – EPF holds conferences on patient empowerment and cross-border healthcare
Pg 33 – Irish Haemophilia Society organises hepatitis C conference
Pg 36 – Eurordis Membership Meeting 2015
Pg 38 – ISTH 2015 Annual Congress
Pg 42 – EHC attends IPFA/ PEI Workshop on blood safety
Pg 44 – Risk-Based Decision-Making for Blood Safety
Announcements
Pg 46 – EHC 2015 Calendar of Events
Pg 47 – Other Events
Pg 47 – Publications
Pg 47 – WFH welcomes new CEO
Pg 48 – EHC Conference 2015 – Final Programme
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.
