We are delighted that our second Youth Alumni Event will take place on the 27th – 29th of January 2023 in the Volks Hotel, Amsterdam, The Netherlands.
The first event for the EHC for 2023, the Youth Alumni Event is set build on our previous Youth Leadership Workshops and aims to explore further training, engagement and reconnecting for participants not only with the EHC but also with their peers from other NMOs throughout Europe. Since the beginning of the Youth Leadership Workshop in 2014 – it has always been important to the EHC to invest in our interaction, engagement and training with the future leaders in our community. We continue to actively engage with our youth participants across Europe and we are delighted to be able to continue to serve their needs and compliment the work of our NMOs.
We cannot wait to see you all again soon!
| What | Youth Alumni Event |
| When | 27-29 January 2023 |
| Where | Amsterdam, the Netherlands |
| For whom | Alumni of the EHC Youth Leadership Workshop |
| Language | English |
| Programme | Coming soon |
| Registrations | This event is by invitation only |
| EHC Staff contact person | Fiona Brennan |
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.
