News

Travelling Exhibition Hits the Road

The panels with photographs of members of the society and Hemojunior, titled "Every Face Has Its Story," have found their first home this year. The large-format portrait photographs by Vladimír Hurt have been on display in Hradec Králové since yesterday. The images were taken last year and have already been exhibited, for example, at the Kotva department store in Prague and on several other occasions. The creation and installation of the exhibition is managed by the company Bayer, from whom the idea originated.

Try the Electronic Registration

For years we have been promising the possibility of electronic reporting of concentrate consumption and online access to basic data. It is finally here - you can try it out. The Institute of Biostatistics and Analyses in Brno has prepared a database that can be used jointly by haemophilia centres and their patients. Everyone needs to ask their centre to set up and provide access to the registry. The centre will enter all the data it normally keeps in the patient file. Most importantly, everyone will have access to their basic data anywhere in the world.

Finally a Clear Statement

As you already know, back on the old website we began corresponding with SUKL (State Institute for Drug Control) about its decisions regarding home treatment. Since we also asked the Ministry of Health and the General Health Insurance Company for their positions, we want to share their responses with you.

Another Step Towards the Goal

On Friday, another meeting of the Coordination Council of the Czech National Haemophilia Programme took place in Prague. It moved things forward once again. The main agenda item was the presentation of certificates to all centres that successfully passed audits. Essentially, all centres that applied received them, with the exception of Usti nad Labem for adults. In northern Bohemia, the situation will be that adults will find their HTC in Liberec and children in Usti. Nothing fundamental changes at other locations across the country.

No World Congress in Prague

The hope that Prague would host the World Hemophilia Congress in 2016 or 2018 has definitively fallen through. The Society Council received an unfavourable decision from WFH headquarters in Canada.

What Is Available — Updated September 20, 2016

The range of therapeutic concentrates available in our country is relatively wide; we bring you an overview. All listed products are registered in the Czech Republic and can be used; the only exception currently applies to the product Wilate. Photographs of packaging and contents may change over time; they reflect the state as of the date of publication. The same applies to package sizes.

Let's Celebrate World Hemophilia Day Together

Just like around the world, it has become a tradition here too. Following a series of successful previous gatherings, this time we invite you to the Hummer Fortress and Hummer Centre. The World Federation of Hemophilia has set the date as 17 April and recommends that celebrations take place around this day. The nearest weekend is the one before, so the big day for all members of the Czech Hemophilia Society and Hemojunior falls on Saturday, 14 April. More details in the attached invitation.

Welcome to the New Website

Dear members, supporters, and visitors of the CSH website, we would like to present to you the new look of the Society's pages. The previous ones served their purpose and met the technical and design requirements of their time, but times move on. That is why we decided to give the website a new coat. Hopefully one that is friendlier, clearer, and more useful for you too. The basic structure has remained the same, many sections as well; only in some cases has their list been simplified.

Off to Ondrášův Dvůr

Along with our new website, we bring news for everyone who would like to participate in the summer haemophilia camp at Ondrášův Dvůr. Registration is available online — do not hesitate, places are limited again.