‘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?!
We are excited to announce that due to the reorganisation of our current VWD Working Group representatives, an additional position has been made available! Therefore the European Haemophilia Consortium (EHC) is launching today, 6th April 2021, a call for one additional volunteer to join our von Willebrand Disease (vWD) Working Group. Volunteers will be expected to start in April 2021 and join the VWD WG for the remainder of their mandate until February 2023.
The working group has been established to create awareness, recognition, support and education about, and for, people with vWD in the bleeding disorder community at European level. The working group provide advice to EHC members, volunteers and staff in matters concerning people with vWD. The working group members are also responsible for the promotion of the vWD platform and attracting participants to its various elements, as well as identifying potential experts to contribute to the content of the programme.
The volunteer 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 candidates will need to submit their CVs, a letter of motivation and a letter of recommendation from the President of their affiliated National Member Organisation (NMO) by 20th April 2021.
The applications will be reviewed by the EHC Steering Committee and applicants should expect to be contacted by the end of April with final decisions on the selection process.
For any further information on the application process, please get in touch with Fiona Brennan.