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.

Register

Complete this online form

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.

Register

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.

Register

Complete this online form

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.

Register

Get in touch with Fiona Brennan

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.

Register

Get in touch with Fiona Brennan

Title

The life course approach to facilitate oral health for people with bleeding disorders

Time and date

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.

Register

Get in touch with Fiona Brennan