It was amongst much excitement and trepidation that the EHC von Willebrand Disease (VWD) Working Group (WG) finally met face-to-face in Dublin, Ireland, on Friday 28 January 2022. The EHC VWD Working Group was established in February 2020 to lead the work of the EHC VWD Platform for Europe. Still, due to the circumstances we have faced together as a community, this was the first opportunity the group had to meet, exchange and plan for the future steps of the VWD Platform since their mandate began.
The WG spent three days sharing ideas and creating an action plan for moving forward and working on behalf of patients with VWD throughout Europe.
The objectives of the VWD Platform are:
- To promote the formation of a European community of people with von Willebrand Disease (PwVWD) under the auspices of the EHC, enabling them to find support and ‘identity’;
- To promote, build and maintain a network of VWD advocates in Europe;
- To increase and improve diagnosis and treatment options nationally;
- To enable those VWD advocates to work at the European level together with other European partners (e.g. EAHAD, EMA, EDQM) towards improving access to treatment and care for all PwVWD.
As part of the Action Plan for the group, we think it is essential that people with VWD receive the necessary information, support and education, as well as make their voices heard to obtain the optimal treatment and care, regardless of the country they live in. As patient numbers involved in NMOs can be small, we feel it is essential to create a European community that collaborates closely with each NMO to ensure exchanges of information and experiences and develop a functioning network on a grassroots level. Each EHC NMO was asked to nominate a person to be the NMO VWD National Ambassador to facilitate this process.
If your country does not have a VWD Ambassador yet, contact Ms Fiona Brennan at [email protected]!
Stay tuned to EHC social media channels for more information and updates on what you can expect from the EHC VWD WG throughout 2022! We are very much looking forward to bringing the community together!
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.
