As you know, haemophilia is a rare disorder, but haemophilia with an additional diagnosis of inhibitors, further places the patients and their families into living with a rare disorder within a rare disorder. It is for this reason that the EHC, guided by the Inhibitor Working Group (IWG), are looking to you, our National Member Organisations (NMOs), to help us reach out to people with inhibitors in your community. The number of patients diagnosed with inhibitors in each country is, thankfully, small, nevertheless this diagnosis brings a degree of stress and isolation. But we can bring those patients together on the European level, in larger numbers, with the help of various support systems. Through the European Inhibitor Network (EIN) they have the opportunity to connect, share experiences, and build a community and support network on a European level!
On this page you can find find materials that will help to reach out to the haemophilia patients with inhibitors who are not yet part of the community.
We are fully aware that local language works the best in local contexts! Therefore we will be happy to work on translation of these materials together with you, so that they can also be printed and distributed in your local languages. Please contact EHC Community Programmes Officer Ms Kristine Jansone about translation and printing possibilities (firstname.lastname@example.org).
So, here is a small flyer outlining possibilities to get involved in the EIN. It also contains contact details of the Inhibitor Ambassadors in each of your countries. You could place it at your (inhibitor-related) events, your offices or work with your Treatment Centre(s) to arrange them being placed in the waiting room.
We would like to ask you, our NMOs, to share information about the EIN with your members. You can do this by word of mouth, on your website, sharing links to our website on social media, advertising the EIN at your meetings and events or including information in your newsletters. We are including here some documents that may help you to do so – a small poster outlining the main objectives and activities of the EIN, as well as flyers about two annual EIN events – Inhibitor Summit and Pre-Conference Workshop.
Thank you for your support and involvement!