EHC Inhibitor Working Group met on the 28 February to plan the work of the European Inhibitor Network (EIN) for 2020.
In the place of the planned trip to Romania that would entail visit to the haemophilia treatment centre in Buzias, meeting with the Romanian Haemophilia Association and participation in the workshop that was oarganised for the people with inhibitors and served as the beginning of inhibitor network in Romania, the EHC Inhibitor Working Group was restrained by the spread of coronavirus (COVID19). A wise choice was made to replace the face-to-face meeting by the virtual one.
In order to replace a two-day face-to-face meeting it was decided to have several video calls, and the EHC Inhibitor Working Group met for the first time in the new composition (the term begun in January 2020) on 28 February for the first video call. From the beginning of this year, the members of the Inhibitor Working Group (IWG) are – Mr Enea Atroce (Switzerland), Ms Christina Burgess (UK), Mr Miguel Crato (EHC Steering Committee), Mr Mirko Jokic (Serbia), Ioana Malita (Romania), Dr Maria Elisa Mancuso (Italy), Mr Jim O’Leary (Ireland) and Ms Teresa Pereira (Portugal). The IWG is supported in its work by EHC Community Programmes Officer, Ms Kristine Jansone.
Despite of meeting in the virtual setting, the IWG was very productive and first addressed the parts of the European Inhibitor Network programme that does not involve the meetings – they set the focus areas for the year, outlined the programme of “Happy 1/2 Hour with an Expert in Haemophilia Care” until October, as well as discussed new initiatives that will be taken up within the network.
In terms of areas of focus the IWG outlined the following:
- Informed and educated patients, especially regarding the new treatments and the different aspects surrounding those;
- Working towards a unified approach by the National Member Organisations (NMOs) in their work for the people with inhibitors, especially when it comes to organising the materials and services, as well as regarding the acmes to treatment.
- In the era of new treatments still providing enough focus on multidisciplinary care, especially physiotherapy, pain management and psychosocial support.
The themes chosen for the “Happy 1/2 Hour with an Expert in Haemophilia Care” reflected some more points of focus:
- 25 March – Adaptive advices and home adaptations with physiotherapist Dr Ruth Mulvany, US
- 22 April – Emicizumab and its practical aspects/implications with Dr Maria Elisa Mancuso, Italy
- 25 May, Monday – Perspectives of gene therapy for people with inhibitors (speaker TBC)
- 25 June, Thursday – Care for caregivers (speaker TBC)
- Summer break
- 25 September – Children ask the questions (speaker TBC)
- 25 October – Considerations of ITI while on emicizumab (speaker TBC)
The new initiatives that the EIN will focus on will be peer-to-peer focus groups for parents and partners of people with inhibitors. Starting in the Sumer of 2020 with a needs assessment, this will hopefully turn into a bi-monthly peer-to-peer video conferences.
Finally, the IWG stressed the importance of the role of Inhibitor Ambassador in ensuring the circulation of the necessary information to and contributing to a better quality of life of the people with inhibitors in their country! The Inhibitor Working Group urges the EHC National Member Organisation who have not yet done so, to nominate an Inhibitor Ambassador, so that their inhibitor community can better benefit from the European Inhibitor Network.