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Minutes of CSH Council Meeting, 3 December 2015

Minutes of the CSH Council meeting in Vráž on 3 December 2015. Present: M. Bohůn, V. Dolejš, M. Skořepa, V. Tóth. Excused: P. Grim, A. Žídková, J. Kalábová.

Global Forum on Treatment Safety and Availability

The World Federation of Hemophilia (WFH) invites experts every other year - in odd-numbered years - to present the latest developments to the entire community. The topics always concern treatment products, each time from a slightly different angle. This time, their safety and availability were on the agenda. It was confirmed that the high safety standards of recent decades leave no doubt that all products manufactured today are, in terms of current knowledge, completely safe and free from the threat of infection by known viruses. The terrible era of HIV and HCV infections is definitively over.

Hemophilia at an Emergency Services Conference

The specialisation of emergency responders -- whether physicians or all others -- is one of the most important issues for the members of the Czech Hemophilia Society and Hemojunior. Both organisations have therefore been trying for some time to recommend a specialist -- a haematologist -- to one of their conferences to inform them about the most important aspects concerning urgent cases involving people with hemophilia. The first step has been taken. At the national conference on emergency medicine and disaster medicine called Pelhřimov Evening, Ondřej Zapletal from the Department of Paediatric Haematology at the University Hospital Brno attended, and his lecture was heard by some 200 emergency responders from the Czech Republic and Slovakia.

European Accreditation of Centres

The Society Council received from Brussels a copy of a letter that the European Haemophilia Consortium sent to the Minister of Health Svatopluk Nemecek. It announces the completion of a three-year joint programme with the European Commission, the result of which is the recognition of European accreditation for national centres. The criteria for granting accreditation were clearly established at the outset by experts; all national federations, including the Czech Hemophilia Society, received the conditions and passed them on to the centres. The Czech Hemophilia Society did so as well and invited centres interested in international accreditation to submit their applications.

Minutes of the CSH Conference of 24.10.2015

The Conference took place at the Jezerka Congress Hotel in Seč, convened by written invitations from the Chairman PhDr. Vladimír Dolejš. As of the date of the meeting, the Czech Hemophilia Society (hereinafter CSH) had 238 regular members, and according to the attendance list, which forms an appendix to these minutes, 33 regular CSH members were present at the start of proceedings. The conference was chaired by Mgr. Petr Grim, a member of the CSH Council.

Meeting of Generations for the Third Time

The autumn-coloured surroundings of Hotel Jezerka welcomed participants to another intergenerational meeting entitled "We Are Here for You." Once again, we were met with a warm reception and top-level services. The dry summer caused the water level of the Seč Reservoir to drop dramatically, but the same cannot be said about the number of participants. Although the attendance did not exceed last year's record, interest was again strong. Around eighty participants of all age groups could look forward to a range of new information from experts in several specialisations, practical demonstrations and exercises related to the previous lectures, wellness, and above all, different generations of those who share something in common with haemophilia met here.

Good News -- The Summer Children's Camp Continues

The information published in the minutes of the Czech Hemophilia Society Council meeting on 25 August 2015, stating that this year's summer camp was the last one for Martin Bohun as head counselor, raised concerns. Will the camp continue? Will this long-standing showcase of the Society come to an end? The answer to the first question is yes, and to the second, no. We are very pleased that the camp will take place again next year, led by Vojtech Hornik. No fundamental changes to its format are expected.

Unconventional Topics at the European Assembly

The annual conference of the European Haemophilia Consortium was hosted this time by Belgrade, Serbia. It addressed certain organisational details of the EHC, while the professional part discussed topics that are not often covered in such circles. Subjects of ageing, the female population, new inhibitor management, and also interesting technical innovations were debated. It became apparent how significantly civilisational processes affect the lives of people with hemophilia. And not always positively. Life expectancy is rising sharply — while in 1938 one could expect to live about 13 years, in 1964 it was 30 years, and now it is multiples of that. People with hemophilia are living to exactly the same age as the general population.

Minutes of the CSH Council Meeting in Prague

25.08.2015, 17:00 - 19:30. Present: Vladimír Dolejš, Martin Bohůn, Michal Skořepa, Václav Tóth, Petr Grim, Anastassiya Zidkova. Excused: Jana Kalábová, Martin Bohůn (attendance until 18:00)