The European Haemophilia Consortium (EHC) will hold its third Youth Leadership Workshop on 8-10 April in a location to be confirmed.
This event aims to bring together young volunteers from its National Member Organisations (NMO) to provide them with training on effective strategies to better engage with their communities as well as to give them an opportunity to meet with peers from other countries. The themes of this year’s workshop will be internal and external communication. The weekend-long event will consist of brief presentations by experienced patient advocates coupled with practical group work so that participants can consolidate the knowledge they’ve gained.
The EHC believes that this training is beneficial to both participants and their NMOs as it supports the growth of their volunteers and their communities. To apply for this event, candidates must meet the following criteria:
- Is a patient with, or carrier of, haemophilia, VWD or another rare bleeding disorder;
- Is between 21-30 years old;
- Has at least one-year demonstrated existing or prior commitment to the NMO;
- Is fluent in written and spoken English and can actively engage in the interactive training of the workshop;
- Will actively participate in the training and any requested follow-up activity or reporting;
- Has capacity to stay actively involved or become further engaged with your NMO, as well as ability to engage other youth.
Candidates will be selected by the EHC Youth Committee. Candidates who wish to apply should send this completed application form as well as a letter of recommendation from the President/ Chairperson of their NMO to Kristine Jansone by 22 January, the latest. Only completed applications will be considered.
For more information about this event, please contact Kristine Jansone, EHC Inhibitors Programme Officer at [email protected] or at +32.2. 893.24.70.
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.
