Annual EHC Inhibitor Summit
One of the most important objectives of the European Inhibitor Network (EIN) programme is to build and maintain a network of people with inhibitors, their families and caregivers from across Europe. Building a community for this group of patients on a European level is essential, as the numbers nationally are too small and thus prevent EHC National Member Organisations (NMOs) from offering them meaningful support.
By organising an annual Inhibitor Summit, the EHC offers a special time and space for people with haemophilia who have inhibitors, as well as their family members and caregivers, to build a community, educate and empower themselves and to improve the quality of their lives, as well as enable them to become their own strong network.
The Summit programme is different every year and allows for both returning participants and those that are joining for the first time to benefit. The programme is built in a way that accommodates a variety of needs and includes different elements, starting from the latest updates on treatment possibilities, to small group discussions for exchange of information among peers, and leisure activities for the young generation of participants. All this contributes to the aim of building a vibrant community!
Inhibitor Summit 2016
The first Inhibitor Summit organised by the EHC took place from 1-4 December 2016 in Barretstown, Ireland – a facility founded by the American actor Paul Newman as a place designed for children living with a serious illness and their families.
The event brought together more than 100 participants, speakers and facilitators from 26 countries in Europe and beyond. The participants were of all ages and included children with inhibitors, their siblings and parents, as well as adults with inhibitors and their caregivers. All of them brought and exchanged their different experiences and practices. The programme combined short scientific lectures with practical work including on the sources of physiotherapy and pain management.
For better insight, you can visit the photo gallery of the event here.
The Summit and the EIN in 2016 were made possible thanks to educational grants from Shire.
Inhibitor Summit 2017
After the great success of the first Inhibitor Summit, the EHC is excited to organise the second edition. Once again, the event will be held in Barretstown, Ireland, from Thursday 30 November in the evening until Sunday 3 December lunchtime. The Inhibitor Summit will be an event dedicated exclusively to people with haemophilia who have inhibitors, their caregivers and family members.
The programme of the Inhibitor Summit will consist of both informational and practical workshops. An important part of the programme will be dedicated to peer-to-peer sessions and exchange between the participants. The programme will also accommodate a variety of needs:
- Russian interpretation will be available for members of Russian-speaking NMOs.
- Special activity programmes will be designed for children and teenagers, with the necessary language support provided by volunteers of the respective NMOs.
- Social programmes will be facilitated.
In addition, the winner of the “Inhibitor Superhero” competition will be announced at the end of the Summit!