Close collaboration with a comprehensive team of medical experts is essential to the European Haemophilia Consortium (EHC) work. In 2017, the EHC created the Medical and Scientific Advisory Group (MASAG) with the objectives to:
- Help ensure a multidisciplinary approach to the work of the EHC,
- Provide advice and guidance on specific areas of EHC engagement,
- Provide strategic input into specific event programmes and activities as necessary, and
- Provide hands-on, in-person support in crucial events as needed
The Medical and Scientific Advisory Group is composed of the following:
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- Rezan Abdul-Kadir
Consultant Gynecologist with a subspecialty in fetal medicine
Royal Free NHS Foundation Trust, London, UK - Massimo Colombo
Hepatologist and Director of the Center for Translational Research in Liver Disease at the Humanitas Research Hospital
Rozzano, Italy - Piet De Kleijn
Physiotherapist
University Medical Centre Utrecht, the Netherlands - Roseline d’Oiron
Clinician investigator
Reference Centre for Haemophilia and Other Congenital Rare Bleeding Disorders, Congenital Platelet Disorders and von Willebrand Disease at Bicêtre Hospital AP-HP, Paris XI University, Le Kremlin-Bicêtre, France - Alison Dougall
Dentist and clinical consultant in special care dentistry
Dublin Dental University Hospital
Dublin, Ireland - Carmen Escuriola-Ettinghausen
Paediatrician and Director of the Haemophilia Centre Rhein-Main
Frankfurt, Germany - Albert Farrugia
Professor Faculty of Health and Medical Science
The University of Western Australia, Perth, Australia. - Anneliese Hilger
Regulatory Advisor, head of the “Blood Coagulation Products” section at the Paul-Ehrlich-Institut
Langen, Germany - Radoslaw Kaczmarek
Post-doctoral Research Associate
Indiana University School of Medicine, Indianapolis, USA - Evelien Mauser-Bunschoten
Haemophilia Specialist
University Medical Centre, Utrecht, the Netherlands - Beatrice Nolan
Paediatrician and Lead Consultant Haematologist about paediatric haemophilia and allied bleeding disorders at Our Lady’s Children’s Hospital in Crumlin
Dublin, Ireland - Cristina Novembrino
Laboratory Scientist and researcher focusing on diagnostic activity and management of research protocols in thrombosis and haemostasis at the Fondazione IRCCS Ca’ Granda – Ospedale Maggiore Policlinico.
Milan, Italy - Jamie O’Hara
Health Economist, health economics lead on an expert panel piloting proof of concept for the development and implementation of a global haemophilia registry and Senior Lecturer in Health Economics at the University of Chester
Chester, United Kingdom - Brian O’Mahony
Brian is the former President of the European Haemophilia Consortium (EHC) and the Chief Executive of the Irish Haemophilia Society. - Debra Pollard
Lead Nurse at the Katharine Dormandy Haemophilia & Thrombosis Centre at the Royal Free Hospital
London, United Kingdom - Frits Rosendaal
Epidemiologist and professor of clinical epidemiology at the Leiden University Medical Centre
Leiden, Netherlands - Glenda Silvester
Regulatory Advisor previously worked for 18 years at the European Medicines Agency (EMA), where she was the lead for blood products. She was the Scientific Secretary of the Blood Products Working Party, which provides recommendations on matters relating to the efficacy and safety of blood products.
London, United Kingdom - Luigi Solimeno
Director, Emergency and Trauma Department, Rare Disease Service
IRCCS Cà Grande Foundation, Milan, Italy - Thierry Vanden Driessche
Director, Department of Gene Therapy and Regenerative Medicine
Free University (VUB), Brussels, Belgium
- Rezan Abdul-Kadir
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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.
