Scaling Up The Knowledge To Empower The Bleeding Disorders Community
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 2024, we focus on education: Scaling Up The Knowledge To Empower The Bleeding Disorders Community!
Serving its community has always been at the heart of the EHC 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, we have created the EHC Academy, a comprehensive educational platform for our 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 EHC National Member Organisations, do 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 EHC Academy. Join us as we take a decisive step forward, together.
Treatment
From the comprehensive insights into blood clotting mechanisms and various treatment options in simple words and different multimedia formats in EHCucate to a cohort-based approach to licensed treatments.
One will also get access to the up-to-date scientific advancements on emerging treatment options under development, tailored for the EHC community in the New Treatment Review.
Explore our dedicated EHC Academy Treatment section to access essential information covering both fundamental knowledge and the latest breakthroughs in bleeding disorder treatment. Whether you’re seeking foundational understanding or staying abreast of cutting-edge developments, our resources ensure you’re well-equipped to navigate the evolving treatment landscape.
Legislation
Explore the EHC Academy Legislation section to uncover the latest European health policy and legislative updates that directly influence the rare bleeding disorders community!
The key legislative initiatives and our periodic Public Policy Review will guide you through the rapidly changing European landscape of health policy which forms a framework for national legislation in the EU.
Access to Treatment and Care
Access to healthcare is not just a privilege but a fundamental human right, upheld by European health systems alongside principles of safety, quality, and equity. The EHC is dedicated to facilitating access to optimal treatment and care through a range of diverse programmes and initiatives.
Within the EHC Academy Access to Treatment and Care section, our community members can delve into topics such as analysing various treatments and evaluating their value, navigating the delicate balance between innovative treatments and state budget constraints, and more. Our online Health Economics Course has been integrated into the Academy to provide accessible education on these critical topics.
Our efforts to promote access to treatment and care are fueled by gathering data and real-world evidence, which inform our work and contribute to consensus recommendations and decision-making processes.
We actively collaborate with broader policy groups and medical/trade associations to ensure that the data we collect and analyse serve as effective advocacy tools and valuable resources for our patients.
Advocacy
The EHC works on behalf of all patients with congenital bleeding disorders in Europe to improve access to treatment and care, as well as the quality of life for patients through partnerships and advocacy.
Through our advocacy efforts, EHC strives to influence public policy in order to continue improving individual and community health, reducing health disparities across Europe and in our National Member Organisations.
The EHC Academy Advocacy section serves as a comprehensive resource hub to support advocacy efforts. Here, individuals can access a wealth of materials, including Principles of Care, Guidelines, completed surveys, and more. We encourage our members to submit materials in their national languages, enriching the collective knowledge and benefiting the entire community.
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.
