An important aspect of the EHC European Inhibitor Network (EIN) programme is the sharing and exchange of information between its National Member Organisations (NMOs). This is a simple thing that the NMOs can do to enable people with inhibitors to be more actively involved in the activities of their NMOs, and will allow NMOs to better tailor programmes for their members with inhibitors and their caregivers.
Through sharing good practices, the NMOs can learn from each other and potentially create services that might not yet exist in their respective countries, or adapt existing ones in order to improve them. This will also hopefully trigger further collaboration between the NMOs with regard to the involvement of people with inhibitors, thus strengthening the EIN and the relations between the NMOs and resulting in better support of people with inhibitors and their caregivers.
In this section of the EIN on-line platform, you will find some good practices shared by EHC NMOs, which we encourage you to read and put into practice by adapting them to your local communities. We also encourage you to share any relevant good practices from your NMO or your experience with us so we can add them to this platform.
What would be your wish for NMOs who undertake a project for people with inhibitors?
“My wish would be that they establish ongoing activities for people with inhibitors, because I think it is not enough to have one activity and say “We have activities for PWI”. Then when you ask more, it turns out that the activity has been 3 years ago. So it is important to have ongoing activities for PWI. And it is important that they are involved in the board of the society.
Also, it is crucial to educate the PWI so that they are aware that their condition is much more complicated than the regular haemophiliacs and therefore they should have more knowledge about their condition. Each haemophiliac says that he knows a lot about his condition, but when you ask about basic facts regarding haemophilia they would not know the answers.”
– Mirko Jokic, EHC Inhibitor Working Group, Serbia
Mirko has helped develop a material about the National and Regional Inhibitor Camp, organised by the Serbian Haemophilia Society. You can download this Good Practice Publication here.
“To enable as many people as possible who are affected by inhibitors to attend or take part in the project. People with inhibitors are the rarest of groups within the haemophilia community. That is why it is so valuable for them to be able to participate. It helps reduce the isolation many of them experience if they can meet with each other and share similar experiences and stories. Also, learning about the new treatments that are nearly here now is extremely important as it gives these people and their families and caregivers much-needed hope for the future.”
– Christina Burgess, EHC Inhibitor Working Group, UK
Christina has helped develop a material about the Newly Diagnosed Family Weekend, organised by the UK Haemophilia Society. You can download this Good Practice Publication here.
