“Build your leaders and you will have a vibrant community that will accomplish change.”
From April 7th – 9th, the European Haemophilia Consortium (EHC) held its fourth Youth Leadership Workshop in the vibrant city of Amsterdam. Under the now-traditional title of “Speak Up, Stand Out, Join the Conversation,” this years’ workshop was designed to equip participants with strategies on how to be more actively involved in their National Member Organisations.
Sixteen participants between the age of 21-30 were welcomed and brought the diversity of Austria, Estonia, Finland, France, Germany, Ireland, the Netherlands, Portugal, Romania, Serbia, Slovakia and Switzerland together. Their energy and enthusiasm for learning how to join their local organisations in moving forward made it obvious that the future of haemophilia is in good hands. For three days, they were involved in activities that combined presentations from experienced trainers with practical and interactive exercises that consolidated the skills they had learned. The themes of the workshop focused on how to engage and retain volunteers, internal and external communication, including engagement with the pharmaceutical industry, and strategic planning and managing of a project.
Outside the “classroom,” real-life experience took over as friendships were easily formed and participants talked freely about every-day experiences and challenges.
The weekend was quick to end but a lot was gained. We are excited to welcome a new class every year, but just as important is retaining the bond we formed with each previous group. Participants are encouraged to continue their involvement and attend other EHC events, such as our Leadership Conference and EHC Annual Conference, and some have become members of various EHC committees.
For all pictures from the event, please visit our Facebook page.
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.
