The EHC Conference gives EHC members a once-a-year opportunity to meet and to learn about the latest scientific and medical information in the field of rare bleeding disorders. These meetings are also an excellent opportunity for EHC working groups and committees to meet and hold workshops on particular topics that they wish to work on with the broader EHC community.
Despite its virtual format the EHC wishes to continue its tradition and give its members the opportunity to further meet, exchange and work together on important topics. Here below you will find further information on all EHC Pre-Conference Workshops content and how to register. Please note that some of these may only be accessible to specific target groups (e.g. healthcare professionals or patient representatives).
Title
Nursing care as part of a comprehensive care model in bleeding disorder treatment
Time and date
Saturday 3 October from 14.00 to 16.00 hrs (CEST)
Target audience
Nurses working with or having an interest in people with rare bleeding disorders
Programme
This pre-conference event will bring together nurses and nominated patients from specific countries to share experiences and develop strategies to improve nurse-patient interaction so that we can empower and facilitate learning for both the nursing community and their patients. It is an outstanding opportunity for regional nurses and patients from their centres to share experiences and develop strategies together to establish best practices.
The event is critically important because the nurse-patient relationship is the foundation of comprehensive care. Nurses play an integral role in caring for patients with bleeding disorders for the duration of the patients’ lives. They are often responsible for providing the patient and their family with information on the daily management of their chronic illness, education about bleeding disorders and treatment and are also the first port-of-call for exploring challenges and providing support.
However, during clinics or over the phone consultations, it isn’t always possible for nurses and patients to have the necessary time to raise their questions, concerns or issues effectively. This can lead to breakdowns in communication and result in both parties feeling the consultation has not been adequate or beneficial.
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Title
Youth Leadership Workshop
Time and date
Sunday 4 October from 12.00 to 17.00 hrs (CEST)
Target audience
Young volunteers within EHC membership
Programme
The Youth Leadership Workshop took place this year as a virtual programme held over a number of days in June. The workshop aims to train the next generation of volunteers and leaders of the European haemophilia community using a mixture of lectures, hands-on exercises and sharing of experiences and best practices from other established volunteers in our community. The objective of the workshop is to encourage and train young people to get involved and active in their respective National Member Organisation (NMO) and to prepare them for potential issues that they may be facing in their volunteering life.
Due to the restrictions of the COVID19 Pandemic, while this year YLW participants didn’t have the opportunity to meet together face-to-face, however, the EHC want to offer further interaction to serve this year’s alumni by bringing them together in a virtual setting again before The EHC Conference 2020 to further their education and community building. The participants will have the unique opportunity to discover the EHC Conference 2020 programme and to explore further avenues of engagement with the European bleeding disorders community.
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Registrations for this event are now closed as we’ve reached full capacity.
Title
Working together in the rare bleeding disorder community – The start of a conversation!
Time and date
Sunday 4 October from 14.00 to 16.00 hrs (CEST)
Target audience
Patient representatives and members of EHC National Member Organisations
Programme
Although women are an integral part of the rare bleeding disorders community, they are not fully represented within the community and many still struggle to access diagnosis and care. In this workshop, the EHC Women and Bleeding Disorders Committee wants to kickstart conversations on the role and place of women within this community.
Join us for an interactive workshop, during which we will hold debates, panel discussions and group discussions to identify ways for further inclusion of women within the rare bleeding disorders community.
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Title
Finding ways for better inclusion of the PWI in the life of the NMO
Time and date
Monday 5 October from 12.00 to 17.00 hrs (CEST)
Target audience
Patient representatives and members of EHC National Member Organisations
Programme
People affected with inhibitor often struggle to feel included within the activities of their national member organisation, often due to the limited capacity of such patient associations. Through this pre-conference workshop, the EHC wishes to give specific knowledge and tools to its NMOs to better support people affected by inhibitors. In this year’s workshop, we will look more specifically at how to manage people with inhibitors during surgery and trauma, latest medical innovation and the state of inhibitor treatment and care in Europe.
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Title
Introducing the Von Willebrand Platform
Time and date
Wednesday 7 October from 15.00 to 17.00 hrs (CEST)
Target audience
Patient representatives and members of EHC National Member Organisations
Programme
In 2020, the European Haemophilia Consortium (EHC) started a working group for people affected by Von Willebrand Disease (VWD). One of the main objectives of this group is to develop a VWD Platform to connect people suffering from this condition, raising awareness and improving access to treatment and care. During this workshop, EHC will unveil the results from its 2019 survey on VWD and look at ways to better integrate this patient group within the work of national member organisations. The workshop will also pass in review the recently issues VWD medical guidelines and how they can be better integrated within national care.
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Title
The life course approach to facilitate oral health for people with bleeding disorders
Saturday 10 October from 9.30 to 14.30 hrs (CEST)
Target audience
Dentists working with, or with an interest in people with rare bleeding disorders.
Programme
This workshop is for dentists with an interest or working with people affected by rare bleeding disorders. During this workshop, participants will be given an introduction to rare bleeding disorders and how to treat people with these conditions, including multi-disciplinary risk assessment of dental procedures, prevention and management of periodontal disease, oral surgery for children and adults. The workshop will finish with group work looking at different case studies.
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Get in touch with Fiona Brennan
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.
