EHC Inhibitor Summit 2018
From 6 to 9 December close to 150 people gathered in Barretstown, located an hour outside of Dublin in the beautiful Irish countryside, for the third EHC Inhibitor Summit. The Summit was also the last EHC event of the year and the culmination point of European Inhibitor Network (EIN) activities led by the EHC Inhibitor Working Group (IWG). It was an opportunity to meet in person with peers who are facing similar situations but also to get information from experts on the management of inhibitors, as well as the latest medical and scientific updates in that management.
For the third year running, the event was held in Barretstown, a not-for-profit camp designed for children who are suffering from severe illnesses and disabilities, so that everything is designed to accommodate people with reduced mobility and special needs. Barretstown was funded by actor Paul Newman and is part of the SerioüsFun Children’s Network of camps across the world.
The EHC was very proud to see that this year numbers of participants (compared to the first year) almost doubled! The atmosphere was one of a family reunion! We were thrilled to see so many familiar faces of returning participants and to witness their personal progress on their inhibitor journey. We were equally delighted to see many new faces and how they were immediately welcomed and taken under the wings of the ‘returning attendees.’ For our part, the initial objective of the Summit, to create a community and peer-support system, seems to be going in the right direction. The event was a mix of lectures on scientific, medical and care topics (such as for example stress management). The programme also featured several peer-to-peer sessions, enabling participants to have their own private space to freely discuss and exchange on issues of concern or day-to-day challenges. Children and teens had parallel programs around the camp that include a mix of adapted sports, arts and crafts activities as well as lectures on how to manage their inhibitors, for example via good dental hygiene that is adapted to people with inhibitors.
The camp is attended by lots of families, therefore during the day, there is free time built into the programme for families to spend some quality time together and do some activities that they wouldn’t normally get to do, such as rock climbing, zip lining or horse-back riding under supervision and guaranteed safety. At the end of each day, participants are welcomed into smaller home groups, designed to allow participants to digest the day’s learnings and events, and address any questions, concerns or other matters in a smaller and more intimate setting.
All of this is made possible thanks to a wonderful team of volunteers and staff from Barretstown but also thanks to the volunteers of the Irish Haemophilia Society (IHS) who have massively contributed in bringing participants to the camp, entertaining the children and helped to ensure that everything went as smoothly as possible.
We also wish to give our heartfelt thanks to all of the speakers and moderators that attended the meeting, giving generously of their free time over the entire weekend. We were really delighted to welcome amongst them representatives from the Canadian Haemophilia Society and also the US National Haemophilia Foundation. Since the beginning of the EIN, it was really important for the EHC to learn from, and exchange with, other Societies on inhibitor programmes, and we are delighted that our colleagues from across the pond have been so enthusiastic about taking part in our Summit and welcoming the EHC to theirs. This ensures that our collective work on inhibitors is coherent and we can all learn from each other and share best practices.
Finally, our biggest thanks go to all of the participants, who make this event truly special! We leave you with some quotes from this year’s Summit and hope that this will encourage many more to attend next year!
For better insight, you can visit the photo gallery of the event here.
The Summit and the EIN in 2018 were made possible thanks to educational grants from Roche, Sanofi-Genzime and the founding partner Shire.