Round Tables:
The EHC organises three Round Tables of Stakeholders each year in Brussels. These events aim to build a bridge between European health policy-making and key issues in access to treatment and care for people with haemophilia and congenital bleeding disorders in Europe. The Round Tables bring together representatives from the patient, medical and scientific communities as well as policy-makers, regulators, payers, industry and other stakeholders to discuss arising issues and their potential solutions. Most of the Round Tables take place in the European Parliament in Brussels and are hosted by Members of the European Parliament (MEPs); this ensures that the issues receive broad coverage and remain on policy-makers’ agendas.
Workshops:
The EHC provides targeted and in-depth training to its national member organisations (NMOs) based on their changing organisational needs, economic climates and political environments. Currently, the EHC is running three series of multi-annual workshops on:
The youth workshops were started in 2012 in order to develop more youth-centred activities and engagement. They provide participants with training on topics such as how to engage and retain volunteers, strategic and project planning, internal and external communication, including engagement with the pharmaceutical industry and more.
The objective of these workshops is to provide patients with technical and practical knowledge and know-how to become more involved in their national tenders on coagulation factors concentrates.
The New Technologies workshop takes place annually in November. Attended by patients, healthcare providers, payers, regulators and other key stakeholders, it examines the technologies behind new and upcoming treatment products and also discusses strategies for patients’ access.
Conferences:
Since 2015, the EHC has organised annual Leadership Conferences to bring multiple generations of patient organisations’ leaders and staff members together for exchange of experiences, best practices and to share positions on common issues and challenges facing the European haemophilia community. Each year the programme consists of a mixture of presentations by leading health care professionals, interactive training and peer-to-peer sessions.
The first EHC Conference took place in 1989, with the aim since being to provide a platform for national patient organisations to gather and discuss matters of treatment, improving quality of life, new drugs and shared successes and developments.
The target group for the conference includes all EHC NMOs (consult full list of members here) and other interested parties, such as other patient organisations, representatives of EU institutions, medical doctors, physiotherapists and other healthcare providers within haemophilia and pharmaceutical companies.
The EHC Annual Conference happens every year during the first weekend of October. To consult the programmes of past and future EHC conferences, please follow the provided link (ehcconference.org).
The EHC also provides training through parallel workshops held during its Annual Conferences. These have included, amongst others:
- Treatment compliance strategies
- How to choose treatment products for your country
- Communication between doctors and patients
- Family dynamics and siblings
- Challenges in mild and moderate haemophilia
- Youth-led strategies for engagement
- Haemophilia Treatment Centres and NMOs working together
- Financing of Haemophilia Societies
World Haemophilia Day:
Each year on April 17th, the EHC together with its members and the global bleeding disorders community observe and celebrate World Haemophilia Day. This day commemorates 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 and in Europe.
To find out more about past and future World Haemophilia Day initiatives, please consult here.
EHC Inhibitor Summit:
The purpose of the Inhibitor Summit is to offer a special time and space for people with bleeding disorders who have inhibitors, as well as their family members and caregivers to build a community, educate and empower themselves and to improve the quality of their lives. In addition, the summit will offer a possibility to spend time in a relaxing environment and to enjoy the activities together.
Publications:
EHC Newsletter
The EHC Newsletter is issued three times annually. It offers up-to-date information on EHC activities, articles from our NMOs and the latest scientific and medical developments in the field of haemophilia and other congenital bleeding disorders.
EHC Annual Report
The document can be consulted in electronic format on the EHC website. To receive a paper copy, please contact the EHC office.
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.
