The European Haemophilia Consortium (EHC) has released its December 2015 Newsletter.
In this issue:
Pg 04: President and CEO Report
Pg 06: EHC News
Pg 06: Physiotherapy in the comprehensive care of haemophilia
Pg 09: Gynaecology and Obstetrics in the Comprehensive Care of Haemophilia
Pg 13: Key messages from the EHC Annual Conference in Belgrade
Pg 17: Addressing the needs of those living with inhibitors
Pg 19: Women in the bleeding disorders community
Pg 22: EHC Leadership Conference – Facilitators’ perspective
Pg 24: EHC Leadership Conference – Participants’ perspective
Pg 27: EHC 2015 Annual Conference, Belgrade, Serbia
Pg 28: EHC Conference Stavanger 2016
Pg 29: Together through the jungle of economics and access to treatment products
Pg 30: EHC New Technologies Workshop – looking on the horizon for novel treatment in haemophilia
Pg 35: Mild and moderate haemophilia beats Brussels lockdown
Pg 36: EHC Youth Committee welcomes new members from France, Serbia and Slovakia
Pg 38: NMO News
Pg 38: NMO Profile: Blæðarafélag Íslands – the EHC Icelandic National Member Organisation
Pg 40: NMO Profile: עלה – עמותה לחולי המופיליה – the EHC Israeli National Member Organisation
Pg 41: Meet Barry Flynn: New Chair of the UK Haemophilia Society
Pg 42: Polish Ministry of Health updates the hepatitis C Drug Programme
Pg 43: Recent advances in haemophilia care in Romania
Pg 44: The Danish Haemophilia Society launches a national telemedicine project
Pg 45: Results of a survey among German haemophilia on extended half-life (EHL) products
Pg 49: Latvia Haemophilia Society receives recognition from Ombudsman
Pg 50: Cycling to Stavanger: eight Dutch volunteers will cycle 900 km ahead of the EHC 2016 Annual Conference
Pg 53: New York Marathon: Eight Italians with haemophilia cross the finish line
Pg 55: Feature Articles
Pg 55: Latvia receives valuable EAHAD-EHC-WFH expert advice
Pg 57: Estonian patients with bleeding disorders need an inter-hospital comprehensive treatment centre
Pg 59: Researcher spotlight: Dr Gianluigi Pasta
Pg 61: Checkmate on haemophilia: identifying the real cost of haemophilia with the CHESS study
Pg 63: Living with haemophilia: A documentary film by Goran Kapetanovic
Pg 64: Making Treatment for All a reality
Pg 66: News from our corporate partners
Pg 66: Baxter’s BioScience becomes Baxalta
Pg 68: Partnering to Change the World for People with Haemophilia – Pfizer
Pg 70: Second Youth Debate held during EHC Annual Conference – Sobi
Pg 72: Hemophilia Lead by Bayer
Pg 73: CSL Behring: Driven by Its Promise to Patients
Pg 74: Innovation takes action – Novo Nordisk
Pg 75: BIOTEST AG supports ‘Project Recovery’
Pg 75: uPatient & uClinics Hemophilia – Grifols
Pg 76: Announcements
Pg 76: EHC Calendar of Events
Pg 76: Other Events
Pg 77: Publications
Pg 78: EHC 2016 Annual Conference – Preliminary 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.
