In this week’s EHC Now! we are delighted to announce our newly formed von Willebrands Disorder (VWD) Working Group which was established in February 2020, to lead the work of the EHC VWD Platform for Europe. Since 2015, the EHC has made efforts throughout our various programmes and activities to address the gaps in the treatment and care of people with von Willebrand Disease. People with von Willebrand disease have often said that they feel isolated and that their disease, and its severity, can often times be overlooked or unrecognised:
‘Looking back, I didn’t realise the impact my diagnosis had on me, my life or my family’s life while I was growing up. It was always on my mind, our minds, I always worried about a bleed. It’s only now as an adult having sought out my own education, sought support and had access to treatment that my life has totally changed. I no longer always end up settling for Plan B! I can go to work confident that I have the ability to stop a bleed quickly rather than wait for it to pass coupled with long stays in hospital – if we can even help one other person then that’s something we need to do!’ Patient with VWD
Up to 1% of the population suffer from von Willebrand Disease, making it the most common type of bleeding disorder. However, since most people experience mild symptoms, only a small number of them may be aware that they have the condition. It is also extremely difficult for some patients to get a proper or clear diagnosis due to many reasons such as the lack of laboratory equipment and expertise, which makes identifying VWD patients a challenge.
With adequate treatment, people with VWD can have a significantly better quality of life and improved health outcomes. However, there remains a gap in support, education, recognition, and the diagnosis of VWD.
‘European haemophilia care is slowly improving and is focusing more and more on underserved groups – so is this our time? I’m not saying I’m going to change the way things are, but I’m definitely going to raise my voice.’ Patient with VWD
With this in mind, in order to take positive steps forward to improve the situation at a European level for patients with VWD, a more consolidated approach to the support, access to treatment and care is needed. For this reason, the EHC recently launched a VWD Platform for Europe, whose objectives 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 European level together with other European partners (e.g. EAHAD, EMA, EDQM) towards improving access to treatment and care for all PwVWD.
In January 2020 the EHC opened a call for volunteers to join our newly established VWD Working Group and we were delighted to receive some excellent applications from our NMOs across Europe. We are thrilled to announce the EHC VWD Working Group is composed of:
Manon Degenaar-Dujardin
Dutch NMO
Milica Dimic
Serbian NMO
Marianna Kladi
Greek NMO
Donal Mc Cann
Irish NMO
Julia Rauscher
Austrian NMO
Joanne Traunter
UK NMO
Baiba Ziemele
Latvian NMO
In 2019, the EHC conducted a survey which was shared with our National Member Organisations, focusing on people with VWD in order to better understand the level of care experienced by patients with VWD and to identify the needs and issues faced by patients with VWD. The results of this survey, currently under review, will help to guide and direct the work of the VWD Platform over the coming years.
The VWD Working Group had their first ‘virtual’ meeting last week and despite our logistical challenges, the group will soon get to work on developing an action plan based on the needs of our European VWD patients. While we are currently facing uncertain times, we at the EHC are certain that this group will actively raise their voices on behalf of our many patients with VWD across Europe and they will ensure that the issues faced by patients with VWD are represented at a European level through the VWD Platform. Keep up to date with the activities of the VWD Platform and the VWD Working Group on our website and social media channels.
We wish the VWD Working Group the very best of luck, we are excited to watch your progress!
The work of the EHC VWD WG is supported by Fiona Brennan, EHC Community Programmes Officer.
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.
