News

We are here for you again

Following last year's successful gathering called "We Are Here for You", we are preparing another edition this year too. Again in the beautiful surroundings of Hotel Jezerka in the Železné hory Protected Landscape Area by the Seč Reservoir, again with a rich programme. The only difference is that we will extend it by one day. We will meet as early as Friday morning, 19 September, and leave Jezerka on Sunday, 21 September.

Where to Look for a Job?

Finding a job with a disability can be difficult. Conversely, there are companies that actively seek employees who are persons with disabilities because they receive tax breaks for them. A new internet portal helps to bring these two sides together.

I Envy...

Over the past three years, my deteriorating health has prevented me from participating in the rehabilitation stays organised by the Society for adult haemophilia patients. The last one I attended was in Velké Losiny. About the stays organised in Lednice, I only have information from friends' stories or from articles published on the haemophilia website.

EURORDIS Request for Cooperation

EURORDIS is a non-governmental patient organisation founded in 1997, and our society is a member. It unites 600 patient organisations dedicated to rare diseases in more than 50 countries and covers over 4,000 rare diseases (more information can be found at www.eurordis.org). As a member organisation, they have asked us for cooperation from our members. It involves filling out a very brief questionnaire that truly takes only a few dozen seconds. The text is in Slovak, but that should not be a problem.

A Word to Our Own Ranks

Mr Bedřich Smrčka, a participant in the spring gathering in Lednice, wrote to us. He asked that we convey his words to the wider public. Dear colleagues, I congratulate you on reading these lines. Not because you will learn something revolutionary, but your attention is proof that you take an interest in life with haemophilia. Some of us are better off physically, others are not. But we all know that tomorrow things could be completely different.

Another Lednice Retreat Behind Us

Another traditional rehabilitation retreat for adults with physiotherapy, procedures, group discussions and evenings, barbecues — simply the right kind of relaxation that brings us together. Being in the Lednice-Valtice area, we also visited a wine cellar. With some sadness, we must note the repeated decline in the number of participants and the lack of interest from physiotherapists. We had been flagging the need for cooperation with new physiotherapists for a long time, but we were unable to attract anyone new. All the more thanks go to Alena and Naďa for joining us once again.

More Questions Than Answers

That is the characterisation of the results of the World Hemophilia Federation congress that ended just dozens of hours ago in Melbourne, Australia. It confirmed that development in the diagnosis, and especially treatment, of this disease is so rapid that the world is responding only very slowly.

A Train Robbery with a Happy Ending

The end of April has traditionally been dedicated to World Hemophilia Day celebrations. This year, the celebrations took place on a larger scale than usual, as they were launched with a charity event in Prague held on 17 April itself. We have already reported on how it went, and you can recall it here. The second part of the celebrations then took place on Saturday 26 April, naturally with members of both the Czech Hemophilia Society and Hemojunior in attendance. Since some members of one or the other organization were apparently prevented from attending due to serious reasons (how else to explain someone voluntarily missing out on this exceptionally successful celebration), we bring you a brief report on how it went.

An Angelic Happening

The word "happening" has many equivalents. Yesterday's event in Prague on the occasion of World Haemophilia Day was neither shocking nor unconventionally artistic, but it became a very pleasant gathering and celebration of an important day. It was the culmination of an ongoing campaign called "I Support Haemophilia Treatment," sponsored by the pharmaceutical company Baxter. A website with the same name was created where people could support the efforts of the Czech Hemophilia Society and Hemojunior by purchasing special items prepared for this purpose.