News

Journey with the Little Prince

Almost everyone knows the book The Little Prince by Antoine de Saint-Exupery, whether child or adult. The book is full of beautiful quotes about life, love, and friendship, and many of us know some of the sayings by heart. In recent days, the 2015 haemophilia camp ended and with it our shared journey with the Little Prince. This year's camp-wide game was inspired by Exupery's most famous literary character and the adventures he experienced.

How to Best Procure

This was the question posed by the European Haemophilia Consortium regarding the procurement of concentrates. It conducted a survey using a questionnaire sent to forty-five member organisations, and the EHC evaluated the results in an effort to determine the most advantageous method of purchasing concentrates. The EHC leadership convened a roundtable of national organisation representatives in Brussels to present recommendations based on experience. Twenty addressees responded to the survey call, another 11 — including the Czech Hemophilia Society — completed the questionnaire in cooperation with centre physicians, and the last seven were submitted by centres alone.

We Know Where to Seek Help

Regular readers of the Society's website and printed Newsletter already know. We have informed several times about the possibility of using home care agencies that can step in when someone is momentarily, or even permanently, unable to self-administer a factor concentrate and has no one around to help. In such cases, a visit from a qualified nurse is a true blessing. More detailed information can be found in this article, or in the information leaflet.

When Autumn Asks

...what the Society was doing in spring and summer, we can answer that, for example, it was preparing the third edition of the gathering "We Are Here for You." Yes, it is now confirmed — Hotel Jezerka in Sec u Chrudimi awaits Society guests on October 23 and 24. The welcoming and elegant setting of the recreational hotel has already earned recognition over the past two editions. Thanks to the Baxter company, several dozen members of CSH and Hemojunior and their supporters gather here. They can look forward to a range of new information from specialists in several fields, practical demonstrations and exercises on the topics of the preceding lectures, a wellness environment, and above all, the opportunity for different generations of those connected to haemophilia to meet again.

Job Opportunity

Tichý svět, o.p.s. (formerly APPN), is looking for a candidate for the position of speech-to-text transcriber for people with disabilities. The candidate will be trained in using the application for online interpreting and transcription — Tichá linka (Silent Line), which facilitates communication with people who are deaf or hard of hearing. During the training, they will learn not only about this application, but also about the world of the deaf and the specifics of communicating with them. Training will take place at the office in Prague-Podolí.

Minutes of CSH Council Meeting, 8 June 2015

Minutes of the CSH Council meeting via Skype on 8 June 2015. Present: Vladimír Dolejš, Martin Bohůn, Václav Tóth, Petr Grim, Anastassiya Žídková. Excused: Jana Kalábová, Michal Skořepa.

Minutes of CSH Council Meeting, 4 November 2014

Minutes of the CSH Council meeting on 4 November 2014 in Vráž. Present: Martin Bohůn, Vladimír Dolejš, Petr Grim, Jana Kalábová, Michal Skořepa, Václav Tóth, Anastassiya Žídková.

Explore the World

The World Federation of Hemophilia has been collecting annual reports with hemophilia-related data for some time and processes them into comprehensive statistics. The data covers the years from 1999 to the present and it is particularly interesting to compare the trends. Statisticians are always somewhat behind, so now the complete data for 2013 has freshly appeared on the www.wfh.org website. They cover 107 countries and nearly 280,000 people, including of course our country. This time, the results are presented in the form of interactive graphs that everyone can customize to their liking.

Renewed Interest

After a period of decline, a turnaround has come -- interest in the adult rehabilitation retreat has grown. Sixteen people interested in rehabilitation gathered in Lednice in mid-May, filling the guesthouse to full capacity. The programme remained the same as in previous years, but it did bring certain innovations. Particularly in the quantity and the associated quality of the rehabilitation itself. There is a difference whether two or four physiotherapists attend to the participants. That is exactly what happened, as two additional therapists joined the two traditional rehabilitation specialists. They normally work at the Vráž spa, which has maintained close contact with the organisation for several years now, so we consider them highly qualified experts.