Irish Barretstown Hosted Inhibitor Patients Meeting

Our group, consisting of Tomas Pekar, Lenka Pekarova, Honza Pucek, Tomas Chad, and Petra Chadova, arrived in Dublin on Thursday afternoon. At the airport, we also met Mgr. Petra Buckova from Brno University Hospital, who was participating in the conference as a speaker on the topic of "pain management." The journey to the camp took under an hour by minibus, during which we had the chance to admire the beautiful Irish countryside with its many sheep and acclimatize to left-hand driving - the real thrill were the roundabouts. Upon arrival at the complex, we were warmly welcomed (among others especially by Jo Eerens and Amanda Bok from EHC) and accommodated in "cottages," which turned out to be small bungalows with several bedrooms, accessible bathrooms, and a common room with a fireplace.

The organizers truly outdid themselves, and the entire conference program was perfectly organized with consideration for the needs of children, who had the opportunity to participate in age-appropriate activities (e.g., fishing, archery, treasure hunting, etc.) and allow the adults to focus on the truly packed program. All participants were divided into several groups to enable everyone's effective involvement in the program.

The morning part consisted of lectures on current topics in the treatment of hemophilia patients with inhibitors and workshops that allowed participants to look at their problems from a different perspective and learn a wide range of insights and practical advice in the areas of physiotherapy and chronic pain management. Presentations from all lectures and workshops will be sent in electronic form by EHC as soon as possible, so that these latest findings can be shared with all interested parties.

The afternoon program began after lunch with a block of leisure activities for all participants (horseback riding, climbing wall, mini golf, craft workshops, etc.), followed by "peer-to-peer sessions," where participants had the opportunity to get to know each other better and share their insights and experiences. The last activity before dinner were "home groups," in which participants had the chance in smaller groups to reflect on their impressions and experiences from the entire day. It was almost unbelievable how quickly people, regardless of nationality and age, were able to open up, share their problems and worries with others, and find a connection.

On Friday evening, the film "Haemophilia Stories" was screened, directed by Goran Kapetanovic in cooperation with EHC. The film documents the lives of hemophilia patients across Europe and highlights the vast differences in treatment levels between the West and the East. After watching this film, one truly appreciates the quality of care we receive in the Czech Republic! As they say, one picture is worth a thousand words. The full film can be viewed at https://haemophiliastories.eu/.

Saturday evening was held in a friendly spirit with an authentic Irish atmosphere created by a musical duo. The symbolic culmination of the congress was a group photo of participants and "memory sheets" (a paper with a photo and name for each participant or family), on which others could write messages and thus support their new acquaintances.

On Sunday morning before departure to the airport, there was a short filming session for another film by Goran Kapetanovic, which will focus exclusively on inhibitor patients. Tomas and Lenka Pekar and Honza willingly provided an interview, and then we were off. Despite a slight delay, the journey to Prague went smoothly; only above Prague did we circle three times due to fog thick enough to cut with a knife before landing safely.

In conclusion, I would like to say on behalf of everyone that this congress was a powerful and enriching experience that to some extent changed our way of viewing the community of hemophilia patients (not only) with inhibitors. I believe the Czech delegation did both organizations proud, and I trust that cooperation with EHC will be deepened even further in the near future. Thank you for the opportunity to participate!!!

Tomas Chad

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