News

Off to Zubri for Camp Again in 2017

The traditional children's hemophilia camp will also take place next year. Below you will find the first details about prices and registration. The dates remain the same -- the first two weeks of summer holidays -- so the camp will run from 1 to 15 July 2017 at the well-known Zubri Recreation Centre near Nove Mesto na Morave. You can look forward to the proven team of leaders and medical staff from previous years, and Vojtech Hornik will once again be the head counselor.

2nd Gala Evening

Dear friends and members, allow us, on behalf of both organizations, to invite you to the 2nd Gala Evening of the Czech Hemophilia Society and Hemojunior, which will take place on Saturday, 11 February 2017, at the Alcron Radisson Blu Hotel in Prague. The program begins at 5:45 PM, with guests admitted to the hall from 5:00 PM. Hemophilia patient Honza Rousar and his band will play for dancing and listening. The program will naturally include a raffle, and an auction of calendars and unique paintings will also take place. Refreshments will be provided in the form of a buffet, and guests will receive beer, wine, and soft drinks free of charge.

Take Matters Into Your Own Hands

Next year, the Czech Hemophilia Society will enter its twenty-eighth year of existence. That is long enough for everyone to be able to evaluate its positives and negatives, to reflect on what can be improved, what to abandon, and what new ideas to introduce. A change of year is a fitting occasion for taking stock and making plans. Before we wish each other all the best, let us reflect. All activities of the Society have stabilised, and everyone can calculate what to expect in the coming year. Members and supporters will once again gather at regular events, consuming what the Society Council serves them. The menu has remained the same for several seasons -- alongside the regular Society agenda, there are World Haemophilia Day celebrations with a rich programme for adults and children, regional seminars, and the autumn highlight in the form of the large "Together About Haemophilia" meeting. And this is where we need to pause.

Irish Barretstown Hosted Inhibitor Patients Meeting

On 1-4 December 2016, the first inhibitor patients conference under the auspices of the EHC (European Haemophilia Consortium) took place in Ireland. The venue was the Barretstown children's camp complex (County Kildare), founded by American actor Paul Newman in 1994 https://www.barretstown.org/. A total of 125 adults and children from 28 countries participated in the conference. In addition to hemophilia patients and their companions, EHC organizers, speakers, volunteers, and sponsor representatives were present.

Useful Links

Learning something new is always worthwhile. We have two tips for you on where to find interesting and useful information. The World Federation of Hemophilia (WFH) has published a long series of materials summarising absolutely everything one needs to know about haemophilia and von Willebrand disease. These are resources of various levels and for various audiences, from members of the general public to professionals. Much of the information is of course basic, but it is not without reason that physicians, physiotherapists, nurses, laboratory technicians, and other specialists draw from these sources. The database of texts, tables, images, and videos is constantly expanding and is available mainly in English, but also in French, Spanish, and Chinese.

Survey on the Lives of Haemophilia Patients, Part Two

You may still remember filling out the questionnaire titled "How Czech Haemophilia Patients Live" in 2011. Since exactly five years have passed since then, it is time to find out where things have moved, what has changed, and how life is now. That is why the society has prepared a follow-up survey. The vast majority of questions are repeated to allow precise comparison of developments. However, some new ones have been added, because back then there was no discussion about extended half-life products, gene therapy, or pharmacokinetics, for example. This in itself reflects the progress, and the survey aims to capture it.

Together again, albeit elsewhere

Many members and supporters of the association have grown accustomed to meeting each autumn at the "Together about Haemophilia" event. In recent years, everything took place at the Jezerka Hotel in Eastern Bohemia, but variety is the spice of life. In cooperation with long-standing partner Shire (formerly Baxalta, before that Baxter), CSH prepared a programme at a hotel by the Aquacentre in Čestlice – just outside Prague, right by the D1 motorway. The programme itself can hardly be reinvented; it is more about what fills the familiar framework. There is always an effort at renewal, but the foundation remains – delivering the latest information needed by everyone, keeping them up to date with developments and the outlook for care, and last but not least, answering as many questions as possible from participants.

Together again

Where and about what? About haemophilia again, as in the three previous autumns, but this time not at Hotel Jezerka near Chrudim, but at Aquapark Čestlice near Prague, practically right on the D1 motorway. Mark the date 21 to 23 October 2016! The foundation is once again the Saturday professional programme, with experts from several fields bringing the latest news. Physicians -- haematologists Peter Salaj from UHKT Prague and Jan Blatný from the Children's Hospital Brno, orthopaedist Petr Teyssler, dentist Eva Zapletalová, physiotherapist Marie Katzerová, and social affairs specialist Marcela Štáfová. Regular attendees already know them all. Specialists in psychology and cardiology are also being negotiated, and on Friday evening there will be an opportunity to meet hepatologist Petr Urbánek, with whom we have been cooperating for several years. An especially interesting topic at a time when new developments in the treatment of hepatitis C are being loudly discussed.

This year's summer camp is behind us

The beginning of this year's summer holidays in haemophilia circles belonged to a truly traditional event -- the Summer Haemophilia Camp. For the third time, we visited the beautiful setting of the Zubří Recreation Centre near Nové Město na Moravě. This year saw many new faces among the camp participants, but the team of counsellors was also partially refreshed compared to previous years. However, all newcomers handled their roles excellently, and the camp proceeded in a relaxed atmosphere.