Jihlava Intergenerational Meeting — Not Just About News in Hemophilia Treatment

The Saturday morning thus set an excellent mood for the subsequent workshops and individual consultations. With a rich selection of workshops, everyone had the opportunity to create their own customised programme. Both psychology-focused topics divided the audience into suitable age groups, giving everyone more space for what interested them personally and perhaps more courage to open up about difficult topics in a smaller circle of participants. The only criticism one could make was that the "Effective Communication with Your Doctor" workshop went beyond its scope (at least in the parents' group) and covered a much wider range of topics, which in no way diminished its interest. Rather, it gave many people courage and provided tips on how to deal with difficult situations. Haematology questions for Jan Blatný are always an indispensable part of the programme, and once again everyone had the opportunity to get a professional answer to their question.

Also during the "Mobile Ultrasound and Physiotherapy" workshop, we got what we came for and felt we were in capable hands, so we trust that the programmes we did not attend (e.g. talking with children and factor application) also met expectations. We would like to sincerely thank the organisers and everyone to whom we owe these interesting, meaningful, and important meetings for all generations and professions. We hope that their tradition will continue in the coming years.

We greatly appreciate and thank TAKEDA for their support, and this year also SOBI.

Mária Sedláková

We would like to supplement Mrs Sedláková's contribution with the words of Petr Slunský, who recapped in a similar spirit but dwelt at greater length on the presentation by Czech Hemophilia Society chairman Martin Bohůn.

At the end of the Friday programme, Czech Hemophilia Society chairman Martin Bohůn informed us about the society's activities over the past period, planned events for 2020, and the outlook for the coming years. He spoke about the next edition of the gala evening of both organisations and highlighted the contributions of the Altman couple. In February, the 12th Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) was held with the participation of more than two thousand specialists from around the world. Health Minister Adam Vojtěch took patronage over the congress and participated in the opening press conference together with EAHAD President Professor Michael Makris, Congress President Jan Blatný, and Czech Hemophilia Society chairman Martin Bohůn. The World Hemophilia Day celebration in April was held at the Landek Mining Museum in Ostrava, and in May, a rehabilitation retreat for adult hemophilia patients took place at the Rokytenka hotel in the Orlické hory mountains. At the end of July, the summer hemophilia camp was held at RS Šafránkův mlýn in the Vysočina region. A new addition was a rehabilitation retreat combined with cycling. A total of six people with hemophilia participated; the project was organised in cooperation with IHBT and Novo Nordisk. The chairman also mentioned new promotional and informational brochures and other educational materials. He spoke about cooperation with emergency services and emergency medicine in connection with distributed identification tags. In 2020, the adult rehabilitation retreat will be held at a different location for capacity reasons — at the Nežárka hotel in the Třeboňsko area (16–23 May 2020). The location of the summer hemophilia camp is also changing — to Dobronice u Bechyně (15–29 August 2020). On the other hand, the Czech Hemophilia Society and Hemojunior gala evening will take place on 11 January 2020 at the traditional venue of the Alcron hotel. In July, another new event will take place — a flight trip to the seaside on the Greek island of Rhodes (15–23 July 2020). The next intergenerational meeting is being prepared for the autumn of next year, with the date to be specified in time. The Czech Hemophilia Society is pursuing a candidacy to host the World Congress in 2024 in Prague. Finally, we watched a video made during the cycling retreat in South Bohemia.

Soňa Svobodová from Plzeň also shared her impressions

As a member of the hemophilia society, I attended the "intergenerational meeting of hemophilia patients in Jihlava" on 16–17 November. I would like to take this opportunity to thank Mgr. Bystrický for his lecture. About 20 people attended and the atmosphere was more than pleasant. Mr Bystrický was not only professionally prepared, but I was surprised by the humour and touch of theatrical flair with which he managed to draw us into the discussion. It was a demonstration that even serious matters can be presented in a way that one leaves the lecture not only with new experiences but also with plenty of wonderful impressions. Anyone who attended the lecture will never forget his "blueberries" which made us smile several times during the talk. Thanks, thanks, thanks.

Finally, a word from the Znojmo haematologist MUDr. Šárka Turková

The hemophilia meeting, thanks to excellent lectures, certainly brought people with hemophilia and their families plenty of important information about currently available treatment options, the development of new therapeutic possibilities, as well as supportive care and rehabilitation. It is a place for sharing invaluable practical experiences. As a physician, I also appreciate the benefit of intergenerational hemophilia meetings from the perspective that they show young people the difficulties that older patients have to cope with, especially joint damage. Thanks to modern treatment and early initiation of prophylactic factor administration, today's young people with hemophilia can lead a practically normal life without significant limitations, just like their healthy peers.