News

Minutes of the CSH Council Meeting 13.10.2013

Minutes of the CSH Council session in Vráž, 13 October 2013. Present: Vladimír Dolejš, Martin Bohůn, Petr Grim, Anastassiya Zidkova, Michal Skořepa, Jana Kalábová. Excused: Václav Tóth

The Time Has Come for Greater Efficiency

The efficiency of treatment with concentrates, whether plasma-derived or recombinant. The demand for better use of products does not come from developing countries, but from developed ones. Even there, they recognise that the economics of treatment plays an important role and that with the same resources, a better outcome can ultimately be achieved. But it is not just about cost-effectiveness — it is also about greater comfort.

Interesting News from the EHC Congress in Bucharest

Participants of last year's annual conference of the European Haemophilia Consortium somewhat nostalgically recalled the days spent in Prague the previous October. Our capital city is not only more interesting than the Romanian one, but the conference programme at the time also better reflected the real needs and demands of the contemporary perspective on haemophilia.

What the World Is Working On

The World Federation of Hemophilia organizes so-called Global Forums in odd years between its regular annual conferences. Usually at its headquarters in Montreal — and so it was this year as well. And the topic? Safety and availability of treatment products. It may seem that everything has long been resolved, but it has not.

We Are Here for You

In other words, a discussion about everything that interests you in connection with haemophilia. We offer you another opportunity to make contact not only with fellow patients with the same condition, but also with specialists. The lack of information and contact with people in a similar situation is keenly felt. Family members, partners, and friends of haemophilia patients who want to be a source of support for their loved ones feel this strongly as well. That is why we consider every personal meeting a significant benefit for members and for the society itself.

Those Who Didn't Come May Regret It

We are talking about the annual Conference of the society, which took place on Saturday and Sunday, 14 and 15 September, in Vráž near Písek. It was preceded by a massive information campaign through personal letters, on the pages of the Newsletter, and on the website. Nevertheless, not as many people came as expected. Despite zero costs, only a small portion of members were enticed.

New Important Body of the Council of Europe

In recent weeks, the Council of Europe recognised the European Directorate for the Quality of Medicines & HealthCare (EDQM) as its member body. EDQM issues recommendations in clinical fields, including the optimal use of blood and blood derivatives. As early as 1999 and 2009, EDQM issued recommendations on the optimal use of preparations that closely concern hemophilia. These recommendations carry great significance, as they take on the character of official Council of Europe regulations.

Genetics of Hemophilia

Last year, as a volunteer, I attended the conference of the European Haemophilia Consortium (EHC), which took place in Prague on 26-28 October 2012. Since I work in human genetics, I decided to write a brief summary of the lectures from the "Genetics of Hemophilia" session held on 27 October 2012. The first lecture, titled "Prenatal Diagnostics - the Czech Republic Experience," was delivered by RNDr. Ingrid Hrachovinova, Ph.D., a researcher at the Laboratory for Hemostasis Disorders at the Institute of Hematology and Blood Transfusion. Dr. Hrachovinova explained the types of genetic diagnostics and the results of genetic testing of hemophilia patients in the Czech Republic.

What Is Home Healthcare?

This is something we are not accustomed to in our country. Abroad, however, such a service has existed for a long time and has proven its worth. Now it is available to our members as well, who can make full use of it. More detailed information about a specific agency can be obtained through the Society. Not everyone is able to self-administer the necessary concentrate, or a temporary indisposition may prevent it. Or another intervention by a qualified nurse may be needed, such as a dressing change, a check-up, or help with rehabilitation. All of this at home, without having to travel to a healthcare facility. Just call and professional help will come to your door.