Looking back at the EHC Virtual Leadership Conference 2021, you will remember that one of the recurring themes in the discussion was about the ways to include all the bleeding disorders in the conversation. The EHC invites you to continue this discussion through the three sessions of the EHC Leadership Academy 2021 – how to truly integrate all people with the bleeding disorders in the work of the NMOs? How to make this integration real, at every stage?
All the NMO volunteers and staff are invited to take part in the sessions of the Leadership Academy! Whether you did take part in the Leadership Conference or not; whether you can participate in all or just one session – every contribution, opinion, idea and thought matters! We look forward to seeing you at the Academy!
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What: EHC Leadership Academy 2021
When: 26 August (16:30-18:00 CET), 23 November (16:30-18:00 CET), 24 February (16:30-18:00 CET)
Where: EHC Virtual Event Platform
Who: Open to all NMO volunteers and staff
How: Interactive sessions, featuring lectures and discussions
Language: Interpretation into Russian will be provided
Registration: Please contact your NMO for the registration!
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PROGRAMME
Thursday, 26 August, 16:30-18:00
Departure point: Changing the perspective of looking at inclusion
16:30-16:40 Icebreaker
16:40-17:10 Human Rights Based Approach in the context of bleeding disorders
17:10-17:40 Impact of an unmet need – group work
17:40-17:55 Discussion
17:55-18:00 Conclusions & Goodbyes
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.
