Every year on April 17, the rare bleeding disorders community worldwide marks World Haemophilia Day. This commemoration is an opportunity to raise awareness about the needs of those affected by rare bleeding disorders. In 2023, we focus ‘On a Pathway Towards Healthy Ageing’, a theme that is equally important for all groups of our community.
During the course of the week, we will address different aspects of the topic:
On Monday watch the address from Declan Noone, EHC President here above and on EHC social media. Check out the outcomes from the EHC needs assessment survey with the bleeding disorder patients aged 50+ here:
On Tuesday we focus on multidisciplinary care and discuss the importance and access to multidisciplinary care as the life expectancy of people living with bleeding disorders has reached that of the general population. To set the scene, we invite you to watch the video from our recent webinar ‘On a Pathway Towards Healthy Ageing: Importance of Multidisciplinary Care and Coordination’. Our speakers Dr Kate Khair and Prof Cedric Hermans discussed challenges and considerations from the perspectives of nursing care and haematology.
To offer you a deeper insight into the broad spectrum of issues that links to the multidisciplinary care of people living with a bleeding disorder, we have selected a few materials from our series ‘Happy ½ Hour with an Expert in Haemophilia Care’ which focuses on multidisciplinary care for people with inhibitors as all of these – psychosocial care, pain management, and dental care – are highly relevant for people living with all bleeding disorders in their ageing process.
On Wednesday join our webinar on liver health to mark World Liver Day 2023! The discussion ‘On a Pathway Towards Healthy Ageing: Liver Health’ features Declan Noone (moderator), Brian O’Mahony (Ireland), Clive Smith (UK), and Prof Vincenzo La Mura (Italy). The recording of the webinar is available on the EHC Youtube channel and EASL Campus.
Thursday is our peer–to–peer day with an online discussion with the community on the topic ‘What does healthy ageing mean for you?’ Find out the gallery here!
On Friday we are happy to present the latest collaboration of the EHC with the documentary director Goran Kapetanovic – the trailer of the film ‘On a Pathway Towards Healthy Ageing’ accompanied by an invitation to the premiere of the film in the European Parliament in June 2023 – watch here.
#ageinghealthy #whw2023 #whd2023
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.
