About the VWD Platform:
The EHC VWD Working Group 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.
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 was needed. For this reason, the EHC 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.
These objectives are in pursuit of the Platform’s broader vision of:
- Bettering the understanding and prioritisation of the needs of PwVWD at all levels;
- Establishing and maintaining European consensus and harmonised standards for VWD;
- Enabling social and intellectual connections between PwVWD; and
- Ensuring that PwVWD themselves are active and effective advocates and/or patient experts.
To achieve the above, in 2020 the EHC laid the foundation of the Platform’s work by:
- Successfully establishing and putting to work a VWD Working Group comprised of cross-geographic, generational and gendered members, and supported by a dedicated EHC staff person;
- Holding team-building, strategic and operational meetings;
- Mobilizing in review of the nascent VWD Guidelines as well as drafting of the EHC VWD survey result and paper; and
- Preparation and delivery of VWD-content at EHC and national events.
Sharing your voice!!
We think it is essential that people with VWD receive the necessary information, support and education, as well as make their voices heard in order to receive 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 important to attempt to create a European community who collaborate closely with each NMO in order to ensure exchanges of information and experiences and develop a functioning network on a grassroots level. To facilitate this process, each EHC NMO was asked to nominate a person to be the NMO VWD National Ambassador.
If your country does not have a VWD Ambassador yet, contact Ms Fiona Brennan on Fiona.email@example.com!
ASH ISTH NHF WFH 2021 Guidelines on the Diagnosis and Management of VWD
2021 saw an exciting and very welcome development in VWD care in the form of the publication of clinical practice guidelines for the diagnosis and management of von Willebrand disease (VWD) which were developed in collaboration with the American Society for Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), and National Hemophilia Foundation (NHF) and published in the journal Blood Advances.
The two development panels, one for diagnosis and one for management, were made up of 32 VWD experts from around the world and included people with VWD, adult and pediatric haematologists, obstetrician/gynaecologists, internists, a dentist, a nephrologist, laboratory specialists, and scientists with expertise in evidence synthesis and appraisal and guideline development methodology. A systematic review of available evidence was conducted by the University of Kansas Medical Center and the panels referred to this evidence to make recommendations as well as to identify key areas where more research is required.
These recommendations offer important guidance on prophylaxis, major and minor surgeries, heavy menstrual and postpartum bleeding, diagnostic thresholds, genetic testing, and much more. They constitute a valuable resource for clinicians and people with VWD in their shared decision making about individual care. They also form a solid foundation for the essential advocacy work to improve access to the recommended diagnostic techniques and treatment options in all countries.
For some patient friendly resources developed by the organisations involved in the publication of the Guidelines click here.
To listen to our EHC podcast with Dr Michelle Lavin from Ireland and EHC VWD WG Chair Manon Degenaar-Dujardin from The Netherlands as they discuss the potential impact these Guidelines will have for patients with VWD from The Netherlands click here.