Due to the COVID-19 pandemic, the EHC Women and Bleeding Disorders Committee decided to move its dedicated Women’s Conference to a series of online webinars on 28 March, 29 May, 25 September and 27 November 2021.
The first webinar of 2021 will be held on Sunday, 28 March, from 15.00-16.20 hrs CET, and it will be on strategies to raise awareness about women and bleeding disorders in the NMO and with the general public.
What: Webinar on Women and Bleeding Disorders – Raising awareness about women’s issue within the NMO
When: Sunday, 28 March from 15.00 to 16.20 hrs CET.
Language: The event will be held in English.
For whom: Patient representatives and healthcare professionals.
Programme: Consult the programme here.
Registrations: You can register for this event here.
Programme
| 15.00-16.20 hrs – EHC Webinar – Raising Awareness about Women and Bleeding Disorders in the NMO | |
| 15.00-15.05 | Welcome and introduction and housekeeping rules |
| 15.05-15.10 | Ice-breaker |
| 15.10-15.20 | Advocacy 101 – How to work within to influence the NMOs objectives and activities?
James Hunt |
| 15.20-15.30 | Partnering up in the NMO – How can men in the NMO support WBD activities?
Ana Pastor & Nuno Lopes |
| 15.30-15.40 | Partnering-up & raising awareness with healthcare professionals
Case studies from France & Serbia Yannick Collé and Tatjana Markovic |
| 15.40-15.45 | Q&A |
| 15.45-16.15 | Guided group discussions:
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| 16.15-16.20 | Closing and announcing the next session |
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.
