The European Haemophilia Consortium (EHC) has published its September 2016 Newsletter.
In this issue:
Pg 02: President and CEO Report
EHC News
Pg 05: Comprehensive care in haemophilia: Orthopaedics
Pg 07: HCV and haemophilia
Pg 10: The 2nd EHC Leadership Conference: Building a cross-border community!
Pg 13: EHC – EAHAD meeting of clinicians: Quality and standards of inhibitor care in Europe
Pg 17: The first highlight of the EHC Inhibitor Programme expected in December 2016
Pg 18: Meet the EHC Inhibitor Working Group
Pg 21: EHC staff and volunteers update
NMO News
Pg 26: NMO profile: Kyrgyzstan
Pg 29: Coagulation factor procurement in Ukraine
Pg 33: Portuguese National Haemophilia Commission created
Pg 35: Danish telemedicine initiative: An update
Pg 36: 25 years of rehabilitation camps in Slovakia
Pg 39: Ukrainian delegation in Lithuanian Summer Camp for children with haemophilia
Pg 41: Azeri NMO organises event on multiculturalism and haemophilia
Feature Articles
Pg 43: Researcher spotlight: Dr Roseline d’Oiron
Pg 48: A new era of haemophilia treatment awaits
Pg 58: RNA interference technology: Fromiscolouring petunia petals to treating haemophilia
Calendar of events
EHC Annual Conference 2016 programme
Announcements
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.
