News

European Commission Approves Treatment for Hemophilia A with Inhibitors

Roche announced that the European Commission has approved the medicinal product Hemlibra for prophylaxis of bleeding episodes in people with hemophilia A with inhibitors. Approximately one in three people with severe hemophilia A develops antibodies against Factor VIII, causing replacement therapy to lose its effectiveness. This leads to a greater risk of life-threatening bleeds or recurrent bleeding episodes. People with hemophilia A and inhibitors face a 70% higher risk of death compared to those without inhibitors.

Jubilee Celebration

Science shows, brain teasers, experiment demonstrations, classic and interactive exhibitions, unexpected experiments, unconventional workshops, and on top of that a super-modern planetarium at the Techmania Science Centre in Plzeň. This is how the website of the city of Plzeň describes the venue we have chosen for this year's World Haemophilia Day celebration, which falls on 17 April every year. We will celebrate it together for the tenth time, this year slightly in advance, on Saturday, 14 April 2018. Since the exhibitions are fully covered, we do not need to worry about bad weather.

A Promising Trail in Zubří

One of the important roles of the Czech Hemophilia Society is undoubtedly the active involvement of young people with hemophilia in its activities. Children have their camps, adults have rehabilitation retreats. But what about those in between? As some children approach adulthood, camps become uninteresting to them — they have different priorities. And hoping that we will meet them again in a few years at the adult retreat? A naive idea. There is therefore a gap that we want to bridge together and give an opportunity to individuals who may be our hope for the future. Not only in organising retreats, but perhaps also in leading the society, which is an indispensable part of our hemophilia community.

First Regional Meeting of Haemophilia Patients in the Hradec Králové Region

In a short period of time, we would like to invite you once again to the capital of the Hradec Králové Region. Although haemophilia was discussed in Hradec Králové recently, this time we are meeting for a different reason — the next instalment of our regional workshops. We would like to invite not only adult haemophilia patients with companions, but also paediatric haemophilia patients accompanied by their parents (or parents alone). Participants will have the opportunity to meet specialists from the local haemophilia centre who help haemophilia patients address their health issues.

Minutes of the CSH Council Session 27.01.2018

Minutes of the CSH Council session on 27.01.2018 in Prague. Present: Martin Bohůn, Jana Kalábová, Michal Skořepa, Lukáš Koblasa, Martin Žídek, Tereza Koblasová, Václav Tóth, Petr Slunský. Start: 11:00; end: 15:00.

The Dance Floor Comes Alive at the Alcron

A unique setting, great company, and a packed dance floor. That is how one could describe the last Saturday of January, which was graced by a gathering of members and supporters of both organisations, the Czech Hemophilia Society and Hemojunior. Since most of the Society's board members were travelling to the capital anyway, we decided to combine the pleasant with the useful. Before the evening festivities, the CSH Board convened for a joint session to discuss further matters and steps in its work, and immediately after the meeting adjourned, moved to the nearby Hotel Alcron.

Summer Haemophilia Camp 2018

With the new year comes the already promised further information about the traditional summer camp, along with registration details. Once again, we start right after the end of the school year -- the camp will take place from 30 June to 14 July 2018 at the well-known Zubří Recreation Centre near Nové Město na Moravě. You can look forward to the proven team of counsellors and medical staff from previous years, with Vojtěch Horník as the head counsellor.

A Weekend for Haemophilia Patients with Inhibitors in Ireland

At the beginning of December, the second conference for inhibitor patients took place in Barretstown, Ireland, intended for haemophilia patients with family companions. The most beneficial presentations were about ongoing clinical trials, new studies being conducted on animals, and also very practical demonstrations on the topic of meditation. Participants with inhibitors were divided into groups by age, and each group then discussed topics relevant to those present. Parents and partners formed a separate group, providing space for moderated discussion and sharing of personal experiences. Approximately half of the conference attendees had attended before, while the other half came for the first time. Most of the presenting physicians were from Ireland or England, and other speakers included former president of the Canadian Hemophilia Society Craig Upshaw.

The Holiday Season Is Upon Us

Before we even realised it, the Christmas season is here again. It repeats year after year, yet it is always a little different. What is it about Christmas that never grows old, that makes us once again immerse ourselves in preparations to celebrate it with dignity, peace, and comfort? Perhaps it is because during this time we feel the need for togetherness more than at any other time.