News

Hemophilia A versus Hemophilia B - Differences and Details

At the European Haemophilia Consortium conference in Prague, I had the opportunity to attend an interesting lecture by Brian O'Mahony - President of the European Haemophilia Consortium. The topic interested me greatly, as I myself have a son with hemophilia B, about which it has always been possible to find much less information and which has always been in the "shadow" of hemophilia A. Mr. O'Mahony mentioned several similarities between the two types of the disease: the same inheritance pattern, similar joint and muscle bleeds, and the need for continuous and comprehensive treatment for both hemophilia A and B. Some studies have shown that hemophilia B is clinically less severe than hemophilia A, while other current studies contradict this hypothesis.

Personal Thanks From the Chairman of the Czech Hemophilia Society

As we all know very well, the EHC Congress took place in Prague on the last weekend of October. Our organisation became a co-organiser, which meant enormous commitment from the entire preparatory committee. Unfortunately, the burden of preparations fell on a very reduced number of Council members of the Czech Hemophilia Society.

Become a Writer

How? Easily. Visit the website www.lidemezilidmi.cz and find out the details of the literary competition. It is open to everyone who has something to say about their life with a health disability and wants to share their views and insights with the public. An author can submit a maximum of three stories in each category. The length of one story must not exceed 5,000 characters including spaces. One author can enter the competition with contributions in all categories:

A Success? It Seems So

The long-prepared annual conference of the European Haemophilia Consortium in Prague is behind us. On Friday, Saturday, and Sunday, our capital became the capital of haemophilia Europe as well.

Haematology Elite to Gather in Prague

Bleeding disorders may not be among the most widespread diseases, but they play a significant role in medicine. If only because society spends considerable financial resources on their diagnosis and treatment. Worldwide, only about 25% of patients receive adequate care, and the Czech Republic is among the best in Europe in this regard. And Europe leads the world, as other continents -- with the exception of North America -- fare considerably worse.

A Rather Encouraging Response from VZP

There has been talk for a long time about the renewed threat of closure of the Prague-based UHKT (Institute of Haematology and Blood Transfusion), or rather its merger with the General University Hospital. This would have very unfavourable consequences for every one of us. The Society's Council therefore contacted the management of VZP (General Health Insurance Company), which — according to available information — bears the responsibility for such efforts. At the end of the year, the period for which it had a contract signed with UHKT expires, without which no such healthcare facility can simply function.

Who Among the Members or Supporters of the Society Can Help?

During this slowly ending year, our society has found itself in serious difficulty. A long-standing and extremely knowledgeable member of the CSH Council, who is responsible for the financial affairs, has been seriously ill for an extended period and is unable to carry out his work. The governing body of the society is therefore urgently seeking an immediate replacement.

Choosing the Most Beautiful Picture

Pictures by children from the summer haemophilia camps. Vote for the best ones for the 2013 calendar! We would like to invite you to participate in voting for the most beautiful pictures by our children. The artworks were created at summer camps at Ondrasuv dvur and Belec. The twelve pictures that receive the most votes from you will be used to prepare the 2013 calendar. All the pictures are beautiful, so help us with your vote to select the top twelve!

The Big Paris Topic

At the recent World Federation of Hemophilia (WFH) congress in Paris, among other topics, speakers and exhibiting companies focused on the electronic communication between treatment centres and their patients. It is something similar to what already works in our country and what we have written about several times -- the electronic database and factor concentrate consumption reporting system. It is obvious that the entire world is heading in this direction, and those who have not yet started will have to do so very soon.