The EHC Belgian National Member Organisation, AHVH, has recently welcomed new board members, including a new President, Mrs Sarah De Witte. We want to introduce Mrs De Witte to the community in this newsletter edition. Please join us in welcoming Mrs De Witte to her new role.
As the new president, I would like to introduce myself briefly. My name is Sarah De Witte. In the past, I studied social work, criminology and law. I have a wonderful husband and a beautiful son. We live in Ghent, and I work as a lawyer. I like baking bread, gingerbread and cakes in my spare time. I also like swimming and jogging.
In 2009, I had a son suffering from severe haemophilia A. A few weeks after the diagnosis, I contacted the Belgian association. Over the years, the association has always provided the necessary support, information and answers to our questions.
In addition to information and answers, the association supported us through contact with fellow patients. Sharing your experiences with others as a parent and someone with a blood clotting disorder is extremely valuable.
Herman De Smet and Patrick Finders-Binje left an indelible mark. They created the organisation’s ethos that strived to be inclusive and participatory and founded itself on connecting with the community and allowing everyone involved to grow with it. We evolve with our association by sharing our experiences and listening to each other. We inform we support, we listen, … to each other.
As an association, we bring together all patients with bleeding disorders who share common concerns. We represent, defend our treatment, inform, provide health education and support scientific research.
As president of our association, I want to commit myself to each of you so that the quality of life of people with haemophilia, von Willebrand’s disease and other bleeding disorders is guaranteed and can improve.
With you, our association can and will grow in the future. Many bleeding disorders are rare disorders. It is important that together we make our voice heard vis-à-vis all stakeholders with whom we come into contact, such as government agencies, health insurance, pharmaceutical companies, doctors, health care providers, …
Do not hesitate to contact me or the association with any questions.
With warm thanks,
Sarah De Witte
To read further about the changes within the Belgian NMO (in Flemish or French), please head to the AHVH website.
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.
