Can’t stop us now – we’re having such a good time!!
In this week’s EHC Now! we talk about youth related activities and what our youth are getting up to in the last few months!!
A lot has changed with regard to our activities and events for 2020 but the EHC, our NMOs and in particular our youth are not going to let these restrictions stop their work!
From EURO2020 to EURO2021 – still adapted, staying engaged!
Some of you might be aware of the EURO 2020: Adapted Football and Physical Activity Camp that was scheduled to take place from July 1st – 5th in Utrecht, The Netherlands. It was with a heavy heart but with our participants and the gre
ater community’s interests at the forefront that we decided to postpone this event until 2021, but that didn’t stop our fantastic youth and community working together and making plans ensuring we did not lose the excitement and momentum generated by the camp. The group therefore decided to bring physical activity, support and community building to you!!
From April 21st – May 14th 2020, the team came together through a private Facebook group twice a week for 30 minutes to take part in community building sessions on virtual physical exercise, resilience and holistic health and well-being and community updates. The sessions were well-attended and provided a positive forum for our youth members to engage with one another and also take some time to engage in physical activity and reflect on self-care and well-being. Thanks to Gaetan and Gytis for their energy, ideas and enthusiasm and thank you to the professionals who took part and brought these beneficial sessions into people’s homes.
High-fives for our Youth Fellows!
The EHC youth alumni taking part in the Youth Fellowship Programme never cease to amaze us with their ideas, motivation and commitment so from us we’d like to say a big thank you – we are truly inspired that even during these challenging times we are still actively working with and contacted by our youth to create projects which reach out and interact with our community.
The Youth Leadership Workshop goes to your home!
In other youth related news, last week the EHC delivered our Youth Leadership Workshop 2020 virtually to delegates from across Europe. The Youth Leadership Workshop is the first step in our Youth Strategy which is designed to bring participants, aged between 21 and 30, nominated by their NMO, together with the aim of training the next generation of volunteers and leaders of the European community. The YLW which is normally delivered over 2.5 days, focuses on three key modules: The Fundamentals of Patient Organisations, Volunteering and Medicines.
For our virtual event we held four two-hour sessions which brought the delegates together to have fun, build our community even further and to learn and explore the highlighted modules. Despite the new virtual setting, the participants and team worked exceptionally together well together and engaged actively throughout. We are so excited to bring this energetic, talented and empowered group together in the coming weeks for a follow-up session and maybe another celebratory toast!
Staying together while staying apart!
So, as you can see while we may be physically staying apart we are staying as connected as possible. Stay tuned to EHC Now! this month for more updates and news from our youth around Europe!
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.
