‘I never realised the impact my diagnosis had on me while I was growing up, it was always on my mind, I always worried about a bleed. Now with more education, support and treatment my life has totally changed. That’s what happened for me with the help of my NMO – if we can even help one other person then that’s something we need to do!’
Patient with von Willebrand Disease.
Does this sound familiar?!
The European Haemophilia Consortium (EHC) are delighted to announce the establishment of our von Willebrand Disease (VWD) Working Group. We are currently seeking up to 12 volunteers to join the VWD Working Group for a period of three years (2020-2023). To view the VWD Working Group Terms of Reference, please click here.
The von Willebrands Disorder (VWD) Working Group has been established to lead the work of the EHC 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.
The EHC von Willebrand Disease Working Group shall be composed of no more than 12 persons:
- One EHC Steering Committee member,
- One to two EHC Staff members,
- A minimum of four patients with von Willebrand Disease, (two of whom should be men with VWD) of different ages and backgrounds,
- One to two parents of persons with VWD with children of different ages,
- One professional caregiver,
- One physiotherapist or other healthcare specialist.
The volunteers shall:
- Be members or have a strong professional link with one of the EHC National Member Organisations (NMO),
- Be fluent in English,
- Have capacity for networking and promoting the message and activities of the European von Willebrand Platform,
- Commit to dedicate enough time to fulfil the activities carried out by the von Willebrand Working Group,
- Members of the working group can be nominated by any NMO of the EHC, following election members will remain on the VWD Working Group until the end of their mandate. Members may only be removed by the EHC.
To apply for this position, candidates will need to send:
- The candidate’s CV, outlining in particular relevant experience such as volunteering,
- A motivation letter outlining briefly their background and why they are interested in joining the EHC von Willebrand Disease Working Group,
- A letter of recommendation from an EHC NMO President outlining why they believe the candidate would make a great addition to the EHC VWD Working Group.