EHC is pleased to launch European Principles of Inhibitor Management in video format. This production is the culmination of two years of collaborative work by multidisciplinary care professionals from the EHC and EAHAD networks, Including haematologists, physiotherapists, nurses and psychosocial experts.
New inhibitor treatment has become available since the production of these principles. Please watch the video to its conclusion for the latest up-to-date information.
The original article outlining European Principles of Inhibitor Management, published in April 2018, is now available in a video format. This tool will serve our membership as an advocacy tool to assist in its work to receive the treatment that their inhibitor membership is entitled to! Management of inhibitors extends beyond clinical treatment of inhibitors, even with new treatment options available! Being a rare condition within a rare condition that generates a considerable amount of isolation and unexpectedness, inhibitor management unequivocally requires support such as specialist nursing care, individually tailored physiotherapy, psychosocial support, advice on employment and social security benefits, as well as maintaining healthy relationships.
Not only are new treatment options not yet widely accessible, but ITI or bypassing agents are often not available as options in many EHC NMO countries, let alone other elements of comprehensive care. We hope that this video, a potent advocacy tool, will help you gain access to these elements in your countries, or at least be the start of proactive dialogue. It is not an understatement to say a rising tide lifts all boats.
The video is available from EHC for use in your countries and NMOs. Please request the video and transcript for subtitles by writing to EHC Community Programmes Officer Kristine Jansone (firstname.lastname@example.org).
We are excited by this achievement and strongly applaud contributors and the European Inhibitor Network.
For your advocacy work to promote European Principles of Inhibitor Management in your countries there are also a poster and a leaflet available, ready to be translated into your languages!
One Coment, RSS