World Haemophilia Day
Each year, on 17 April, the EHC joins the global bleeding disorders community to commemorate World Haemophilia Day.
This day celebrates the birthday of Frank Schnabel, founder of the World Federation of Hemophilia (WFH), and serves as a platform to raise awareness about key aspects of haemophilia and congenital bleeding disorders globally.
World Haemophilia Day 2024
Every year, April 17 is an opportunity to raise awareness about the needs of those affected by rare bleeding disorders. In 2024, the EHC focuses on education: Scaling Up The Knowledge To Empower The Bleeding Disorders Community!
Serving its community has always been at the heart of the EHC’s work, and so is patient education. We aim to ensure access to education for patients and patient organisations through its diverse educational materials and programmes.
To make the experience more inclusive and user-friendly, the EHC has created the EHC Academy, a comprehensive educational platform for its members.
EHC Academy: Advancing Patient Education From Every Angle
Within the Academy’s virtual halls, you’ll find a wealth of knowledge on bleeding disorders, spanning from fundamental concepts to detailed information on treatment options.
Explore our EHCucate project, where we outline both established and cutting-edge treatments, and learn about the currently available treatment options (organised by cohort) as well as upcoming therapies (featured in our EHC NTR – Novel Therapies Review). In our ongoing commitment to empowerment, we’ve incorporated our online Health Economics Course, providing invaluable tools for advocacy at the national level. Furthermore, delve into the legislative landscape of the EU to understand the framework shaping our advocacy efforts.
The EHC Academy isn’t just about information—it’s a dynamic hub of resources. From surveys to care principles, handbooks to guidelines, our platform is a database of patient-centred materials. As the treatment landscape evolves and advocacy tools evolve alongside it, the EHC Academy will evolve in lockstep. Through unique, high-quality knowledge and practical tools, we aim to elevate advocacy skills and pave the way toward a better quality of life for patients across Europe.
Our dedication to our mission remains steadfast, encapsulated in our motto: Empowering the Bleeding Disorders Community!
We urge all the EHC National Member Organisations to send us their materials in their languages to make this platform truly valuable for our big multinational family. Please contact us at [email protected] to know how you can contribute to the EHC Academy. Join us as we take a decisive step forward, together.
World Haemophilia Day 2023
In 2023 the EHC organised a 1-week awareness-raising campaign focused On a Pathway Towards Healthy Ageing, a theme that is equally important for all groups of the bleeding disorders community. During the week from Monday 17 to Friday 21 April, the EHC addressed different aspects of this theme.
On Monday, 17 April, on WHD, the EHC published on its main communication channels an address by the EHC President Declan Noone, and a detailed infographic outlining the outcomes from the EHC needs assessment survey of bleeding disorder patients aged 50+.
On Tuesday, 18 April, the EHC focused on the importance of 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, the EHC released the video of its webinar On a Pathway Towards Healthy Ageing: Importance of Multidisciplinary Care and Coordination. Speakers were Dr Kate Khair and Prof Cedric Hermans discussing challenges and considerations on multidisciplinary care from the perspectives of nursing care and haematology. The EHC also selected a few relevant materials from its series Happy ½ Hour with an Expert in Haemophilia Care which focuses on multidisciplinary care for people with inhibitors.
On Wednesday, 19 April, World Liver Day, the EHC held a webinar with prominent experts on the topic Liver health: focus on care post-viral infection and post gene therapy. The webinar featured Declan Noone (moderator), Brian O’Mahony (Ireland), Clive Smith (United Kingdom), and Prof Vincenzo La Mura (Italy). This event had also interpretation in Russian.
On Thursday 20, April, the EHC held a peer–to–peer day with an online discussion with the bleeding disorders community on What does healthy ageing mean for you? – creating a virtual gallery collecting different perspectives.