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 Fiona.firstname.lastname@example.org!
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!