The European Haemophilia Consortium has published its September 2017 Newsletter.
In this issue, you will find:
Pg. 03: President and CEO Report
Pg. 06: EHC News
Pg. 06: Comprehensive care in haemophilia: Elective Surgery for People with
Haemophilia and Inhibitors
Pg. 11: EHC Round Table on Orthopaedic Aspects in Haemophilia Care
Pg. 14: United in Diversity: EHC Leadership Conference 2017
Pg. 18: UPDATE: EHC PARTNERS Programme on Increasing Access to Treatment
Pg. 21: UPDATE: The EHC Women’s Working Group
Pg. 23: EHC Online Platform for People with Haemophilia and Inhibitors
Pg. 25: NMO News
Pg. 25: NVHP: Support System of the Dutch Haemophilia Society
Pg. 27: Amendment of German HIV-Foundation-Law for Victims of the Blood Scandal
Finally Achieved
Pg. 29: EHC Activity Grant
Pg. 33: Marking of World Hepatitis Day in Azerbaijan
Pg. 34: The Azerbaijan Association of Patients with Haemophilia Celebrates 20 Years
Pg. 36: Mr Josko and Acquired Haemophilia
Pg. 39: Tracing the Treasure Chest – The Haemophilia Camp of Turkey
Pg. 40: The New Danish Times
Pg. 43: Feature Articles
Pg. 43: Researcher Spotlight: Dr Roberta Palla
Pg. 47: EURORDIS: Defining the Future of Rare Diseases
Pg. 51: Life Journey: The Good, The Bad, The Ugly and The Beautiful
Pg. 53: EHC Calendar of Events
Pg. 54: 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.
