The EHC team is delighted to welcome Nastassia Kisialeva who joins us as Communications and Public Policy Officer. Nastassia or Nastia – as she’s nicknamed – will work together with Laura Savini to support EHC’s communications and public policy activities. As the EHC heads into a strategic retreat this weekend to look at its work for the next four years, we have a quick chat with Nastia about her background and what she is looking forward to in her new position.
Nastia, you have a double nationality, Belgian and Belarussian, can you tell us a little bit more about that:
I was born in Belarus and moved to the southern French-speaking part of Belgium with my family when I was a child and this is where I lived and studied before moving to Brussels end of last year. Although I still have some relatives in Belarus, most of my immediate family is here in Belgium.
What is your professional background? Where did you work before coming to the EHC?
I studied translation at university and focused on Russian, English and French. Just after graduation, I worked for a consulting firm. My main job there was to organise training for veterinaries from across Europe on the latest European veterinary legislation. These events were part of a European-funded project. We took care of all of the logistics and content. After a couple of years, I moved to the Belgian Ministry of Defence and became a translator and analyst. My job there was to do translations from English and Russian into French. I worked closely with the military as a civilian, and that gave me some exciting insights into the working of the Belgian government. I stayed in this position for five years, and although the job was rewarding, I felt that I needed a change.
Nastia joins the EHC as Communications and Public Policy Officer
You have no previous experience with patient organisations or haemophilia, what attracted you to the position?
While working at the Ministry of Defence, I felt that I lacked contact with people influenced by my work. I wanted to find something where I could see the concrete impact of my day-to-day work and contribute to valuable projects, as the ones implemented by EHC. This is why EHC appealed to me and made me decide to apply for the role. I like the idea that as part of the EHC staff, we are in touch with National Member Organisations (NMOs) and get to hear first-hand about their issues and then work together to identify ways to overcome those issues.
What will be your priorities in the first few months in the job?
I am new to this community, and the first thing will be to get up to speed on content and getting a better grasp of the environment in which the EHC operates. It is my understanding that the EHC is always evolving, and new activities are continuously emerging, as you will have seen from yesterday’s post in which we announce the creation of a Von Willebrand Network!
As noted above, I will be working closely with Laura on Communication and Public Policy activities. The exact plans of how those tasks will be shared between us are still in the works, and probably a lot of it will be discussed during the strategic retreat this weekend. For now, though, I can already say that I will take over the organisation of the Round Table of Stakeholders and the organisation of the World Haemophilia Day event that will be held on 24 April here in Brussels.
Another big part of my job will be to oversee the translation of our website into Russian and to ensure timely communication with our Russian-speaking members. As readers probably know by now, Jo Eerens, the former EHC Membership Officer, retired in November, and the EHC is now considering how to share his tasks best. I won’t say much more though as this is something that we will announce in next week’s EHC Now!
On a personal note, though, I heard that there are still some significant discrepancies in terms of access to care between Western and Eastern European countries and I want to put my language skills to contribute to support the work of that part of the community.
Since you bring pretty impressive language skills to the job, we’re introducing our ‘Russian Friday’ on social media, can you tell us what that is?
EHC’s was set-up to serve its members both in English and in Russian, and for years, the EHC wasn’t able to do this as much as it would have liked. I want to use my language skills to contribute further to serve these NMOs, and one first step in doing this is to give them more timely information. So, we decided that our social media posting (on Facebook and Twitter) each Friday will be a summary of the week’s news and updates in Russian. In this way, our members will have a regular and quick way to see what the EHC and the community at large have been up to. Keep an eye for it on our social media: the first edition is coming this Friday.
Finally, to conclude the interview, can you tell us about you on a more personal level. What do you enjoy doing in your free time?
I love spending time with friends and meeting new people. I also love to read, go to the theatre and concerts and doing some sport. I generally enjoy having a good time with my partner, friends and loved ones.
Thanks, Nastia! We’re delighted to have you on the EHC team and I’m sure our community will soon enjoy getting to know you better, as much as we have!
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.
