We are delighted to introduce you to our latest EHC addition, Daria Mironova. Daria joined us in December as Communications and Public Policy Officer. For this edition of our NMO Newsletter, we wish to tell you more about Daria and her role within the EHC.
Daria, can you tell us about yourself?
Yes, of course. I am a Russian national, and I was born and raised in Russia’s Far East and then moved to Moscow (Russia’s capital) for my university studies. I hold two Masters degrees, one in international relations and foreign politics and the other in international business. These two topics have heavily influenced my professional choices. I started my professional career in the expert community on international relations and security studies, which led me to the United States, where I completed the US State Department International Visitors Leadership Programme (IVLP) on US-European security issues.
After this, I pivoted my career towards business with work experiences in the innovations and technology sectors. I mainly focused on strategic planning and business development. I came to Brussels for personal reasons, and I was looking for a new challenge, which I believe I have found.
What attracted you to join the EHC?
In the past few years, I have yearned to shift my professional focus to dedicate myself to a higher cause to help and support others. This desire also came from some personal experiences I had. I wanted to bring my skills and expertise from the international politics and business worlds and apply them to an NGO such as EHC. In particular, I believe that my ability to think outside the box and make the most of limited resources will prove particularly valuable to an organisation like EHC.
What are some of your most significant projects and priorities at EHC?
My number one project is the EHCucate app, which has tremendous potential to empower patients through knowledge to become better advocates for themselves. Something that I believe is highly valuable to people living with chronic conditions. But I also think that learning becomes more accessible when playful and fun. So my objective is to make sure that learning through EHCucate will be a pleasurable experience, and I am lucky to be surrounded by a talented team of medical writers, designers, educational and IT experts to make this happen.
My second priority is to help EHC better serve its Russian NMO and all other members who use Russian as their vehicular language. I want to build connections with them and ensure that they benefit fully from their EHC membership.
Finally, I will be supporting the communications activities, which will involve developing a strategic plan for how EHC can further enhance its communications with members and the general public. This third objective is vital to continue to raise awareness about bleeding disorders and the issues faced by those affected by them.
Thank you, Daria. It sounds like you have quite a challenge ahead of you and that these three objectives will keep you quite busy. As a final note, can you tell us something about yourself that we may not know and that perhaps helps you unwind in your free time?
It is not a secret, but I play the violin, which also helps me disconnect from work. I also like to write poems in Russian whenever I get some inspiration for this. Currently, though, I am polishing my French to better settle in Brussels. I am getting adjusted to incorporating a new language in my everyday life, so poetry has taken a back seat for now.
Thank you, Daria, for this interview and welcome to the EHC community. Daria will be attending some of our next hybrid events, such as the Youth Leadership Workshop and the Women’s Conference, and you will get a chance to meet her in person, so do not hesitate to come and say hi.
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.
