‘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.
Eligibility:
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.
Applications should be sent to [email protected] by 20th April 2021 at the latest. EHC_vWD WG ToR
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.
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