News

Cooling Gels for Haemophilia Patients

Medi-Globe s.r.o., a company that manufactures products for minimally invasive methods in the core areas of urology and gastroenterology, donated 400 cooling gel packs to the Czech Hemophilia Society. These can help not only with bleeding into joints and muscles, but also with pain relief and subsequent recovery. The gift was received from the hands of the company's managing director Thomas Garbe by CSH Chairman Martin Bohun, together with long-standing Society member Vladimir Mik, who played a major role in securing this donation.

We Observe World Hemophilia Day

World Hemophilia Day falls on 17 April and its main goal is to raise public awareness about hemophilia and other related blood clotting disorders and to gain attention and understanding for them. Thanks to the efforts of patient organizations from around the world, access to care is gradually improving even for those who still remain without treatment. Its history dates back to 1989 and the World Federation of Hemophilia (WFH) chose 17 April in honour of the birthday of its founder Frank Schnabel. The WFH was founded in 1963 and is headquartered in Montreal, Canada, currently registering 140 member countries across all continents.

Vráž Spa through the photographic lens of people with haemophilia

In recent days, almost twenty people with haemophilia, this time not only those with inhibitors, headed to the Vráž spa facility near Písek. It has become a tradition for people with haemophilia to meet in Vráž twice a year -- in spring and autumn. The week-long intensive rehabilitation programme includes group and individual exercises, hydrotherapy, and educational lectures by leading experts. This time was no different.

Hemophilia patients head to Landek...

...or World Hemophilia Day celebrations in Ostrava on 27 April 2019. We have decided to invite members of both organizations to Landek Park in Ostrava, where we will once again commemorate the day dedicated to hemophilia patients around the world. On 17 April 2019, it will be thirty years since the World Federation of Hemophilia, in honor of the birth of Frank Schnabel, its founder, designated this date as World Hemophilia Day. During this period, the whole world dresses in red, prominent buildings in world capitals are illuminated, and various happenings, press conferences, and social gatherings of those connected with hemophilia take place. The Czech Republic is not lagging behind in this regard.

Minutes of the CSH Council Session 16. 2. - 17. 2. 2019

Minutes of the CSH Council session on 16 and 17 February 2019 in Vacenovice. Present: Jana Kalábová, Martin Bohůn, Michal Skořepa, Martin Žídek, Lukáš Koblasa.

Another Gala Evening Is Behind Us

The gala evening of the Czech Hemophilia Society and Hemojunior, held on Saturday 12 January 2019 at the Alcron Hotel Prague, has become a wonderful tradition. The event was above all an opportunity for all of us to meet again and enjoy ourselves in pleasant surroundings and festive attire. Moreover, 2019 is a special year for Hemojunior. Michael Beren recalled its eighteen years of service for children with hemophilia. He also took on the role of master of ceremonies and guided us through the entire evening. At the opening, he welcomed the attendees and thanked the sponsors, without whom our organizations could not provide most activities for their members, and greeted their representatives. Thanks were also extended to the physicians and, last but not least, to the management and staff of the Alcron Hotel.

Summer Camp Information Update

Due to the sudden closure of the Zubri Recreation Centre, which we reported on in early February, we were forced to seek an alternative way to hold the 2019 Summer Haemophilia Camp. The good news is that we have found a solution and the camp will take place, but we had to make several compromises. The key change is the new camp dates — it will now run from July 28 to August 8, 2019. This is a shortened period from Sunday to Thursday; instead of the traditional two weeks, the camp will last 11 days. The location remains in the Vysocina region — Pension Safrankuv Mlyn (www.safrankuvmlyn.cz) will host us. Accommodation will this time be in a building, but the grounds will provide ample opportunities for outdoor activities (the facility is situated in a secluded spot surrounded by nature), as well as space for medical facilities and physiotherapy, including a private swimming pool.

Experts in Prague. Czech Republic Hosts the Congress of the European Association for Haemophilia and Allied Disorders (EAHAD)

In early February, the 12th Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) is taking place in Prague, attended by some 2,500 experts from around the world. For the Czech Republic, this is a recognition and acknowledgement of the physicians, nurses, physiotherapists, psychologists, and all who care for and support people with blood clotting disorders. The congress was held under the patronage of Minister of Health Adam Vojtěch, who attended the opening press conference together with EAHAD President Professor Michael Makris, Congress President Jan Blatný, and the Chairman of our organisation Martin Bohůn.

Complications with the 2019 Summer Haemophilia Camp

We have recently received information from the Zubří Recreation Centre that they are forced to cancel all summer stays at the facility for operational reasons, meaning that our summer haemophilia camp cannot take place there either. We are currently working intensively to secure an alternative venue. We will do everything possible to change only the location and not the dates; however, given the relatively short time remaining until the summer holidays, we are not able to guarantee anything at this moment. Registration for the camp is still open — you can find the registration form at this link.