News

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.

Indian Summer at Ondrasov Dvur

For the ninth time, and most likely the last, our camp visited the Beskid mountain recreation center Ondrasov Dvur. Nearly 60 members of the Gothaj Indian tribe gathered here to unite in a common fight against the palefaces. We divided into four groups - Children of the Sun, Coyotes, Wakpa, and Peta Oyate - between which rivalry reigned during the stage games, but the everyday camp routine was the same for everyone.

Annual Conference at a Spa? Why Not?

This has never been done before. The supreme body of the association always met in Prague, with venues changing over time. This time, a radical change is taking place - we are leaving the capital and moving the meeting venue southward. Specifically to the Vráž Spa near Písek, and it is free of charge for members and their companions.

Memories of Lednice

With some delay, for which we apologise, we bring information about this year's rehabilitation stay for adult haemophilia patients. The stay took place from 17 to 25 May with 19 participants. Compared to previous years, this represented a significant decrease in the number of attendees. Health and personal issues unfortunately prevented several regulars from attending. However, new faces appeared again and blended very well into the established group.

The Society Safely Back in Harbour

It navigated the challenges of the Bata Canal connected to the Morava River and, after several kilometres, returned to the harbour in Veseli nad Moravou. Not the entire Society, but those members and guests who came to celebrate this year's World Hemophilia Day. The actual date is in April, but since it can be windy on the water, the Society Council decided to postpone D-Day to May. It paid off -- the weather was very generous and after a long, persistent winter, it showed a friendly face to both sailors and passengers.

You Can Help Not Only Yourself

We are reaching out to you through the Czech Hemophilia Society, which brings together patients, family members, and friends of those affected by blood clotting disorders.

What Is Preimplantation Genetic Diagnosis?

Carriers of rare hereditary diseases, including haemophilia, want to know when starting a family what the chances are of having a healthy child without the condition. They are offered two options: prenatal genetic diagnosis or preimplantation genetic diagnosis (PGD). PGD is a method that enables the selection of an embryo without a specific genetic burden. Its defining characteristic is that the embryo selection takes place before its transfer into the uterus.

World Hemophilia Day? This Time, Sailor Style.

It is celebrated all over the world every 17 April. This time, however, we are postponing it slightly and waiting for better weather. We will be sailing on the Bata Canal.

The Deceptive Game of Numbers

The World Federation of Hemophilia has just published freshly compiled statistics on the diagnosis and treatment of haemophilia worldwide in 2011. Data collection and processing is so complex that results regularly appear only at the beginning of the following year. The data comes from individual countries that report information about their systems.