News

Minutes of the CSH Council Meeting 11.09.2017

Minutes of the CSH Council meeting via Skype on 11.9.2017. Present: Vladimír Dolejš, Martin Bohůn, Václav Tóth, Jana Kalábová, Michal Skořepa, Petr Grim.

Together About Haemophilia -- Again

We cordially invite members of the Society and Hemojunior to the next edition of the intergenerational gathering of haemophilia patients and their loved ones on Friday and Saturday, 13 and 14 October. The fifth annual edition of the traditional "Together About Haemophilia" meeting will take place this time at the Top Hotel in Prague (https://www.tophotel.cz), once again in cooperation with Shire. After a year, therefore, a move from nearby Čestlice -- unfortunately unwanted, but for certain reasons unavoidable. The complete professional programme is concentrated on Saturday, with an expected start at 9:00 and finish at 16:00. However, you can arrive a day earlier; accommodation will be available at the hotel. Non-members may also attend in any number; only the participation fee differs.

Viral Hepatitis C

A number of Society members are dealing with hepatitis C infection, whose treatment has been very problematic until now. But better times are ahead, and hope has emerged. We asked for expert information from Prof. MUDr. Petr Urbanek, CSc. from the Department of Internal Medicine, 1st Faculty of Medicine, Charles University and the Central Military Hospital in Prague, who has long been dedicated to the care of haemophilia patients. His text is rather difficult for laypeople, as is often the case with physicians, but it brings the most important message -- hepatitis C can now be successfully treated. Every haemophilia treatment centre has the details.

Notes from a participant

Notes from a participant of another meeting of Northern Moravian haemophilia patients in Ostrava. The centre there is particularly active, cooperates effectively with the association, and so we are happy to give the floor to one of the satisfied guests. The second Haemophilia Day in Ostrava took place once again in the beautiful setting of the Imperial Hotel, where considerably more of us gathered than last time. After a coffee and a small refreshment, we sat down for the professional lectures.

Adult Rehabilitation Retreat in Vísky

This year's edition was marked by newcomers. There were eight of them, and another three participants returned to the retreat after many years. The retreat was record-breaking not only in this regard, but also in terms of the total number of participants. After a year, we once again gathered at Penzion Ohrada in Vísky near Letovice, where we had full facilities at our disposal. Accommodation with meals, a common room, rehabilitation rooms, a whirlpool, a swimming pool, and last but not least a conference hall with projection where we watched the Ice Hockey World Championship. The result of our hockey players was perhaps the only negative of the entire retreat. Its programme hardly needs a lengthy description any more. Rehabilitation and hydrotherapy were complemented by horse riding, excursions, a table tennis tournament, barbecues, and campfire cooking. More in the photo documentation.

Following the Tracks of the Oslavany Permons...

Just a few kilometres southwest of Brno lies an area that this year became a refuge for all those who decided to come and celebrate World Hemophilia Day. A day full of relaxation, discovery, fun, victories, and adventure awaited them. We're talking about the Permonium amusement park. It was created based on Oslavany legends on the grounds of the former Kukla coal mine, where six mysterious permons (mine spirits) have lived since ancient times - Starohorský, Bouchal, Zaklášterský, Vinohradský, Kovářova kopce, and Kopce Koblihu. The park is suitable not only for families with children, but visitors of all ages can find something enjoyable here. And so, once again after a year, traditionally thanks to Novo Nordisk, we had the opportunity to meet "our own" and experience an extraordinary day full of adventures and new discoveries.

Minutes of CSH Council Meeting, 3 April 2017

Minutes of the CSH Council meeting in Prague on 3 April 2017. Present: M. Bohůn, P. Grim, V. Dolejš, M. Skořepa, V. Tóth, P. Slunský (Chair of the Audit Committee). Excused: J. Kalábová. Start at 16:00, end at 18:15.

Become Miners...

...and come celebrate in Oslavany. We warmly invite all members of the Czech Hemophilia Society and Hemojunior to traditionally commemorate and celebrate World Hemophilia Day. The "Permonium" amusement park in the closed Kukla mining complex carries on the local coal mining tradition. Everything will take place on Saturday, 22 April, in a venue full of extraordinary scenery, sets, and props, where the spaces conceal secrets millions of years old. Exciting attractions, modern technological equipment, and top-quality facilities are all prepared.

An Evening Full of Great Entertainment

The beautiful setting of the Prague Alcron Radisson Blu hotel last Saturday (11 February 2017) was the venue for the 2nd gala evening of the Czech Hemophilia Society and Hemojunior. Sincere thanks for their willingness and generosity go to the hotel management for once again allowing us to hold a joint evening in these extraordinary premises. The renowned Alcron restaurant is one of three restaurants in Prague to have received Michelin stars. Guests were therefore able to enjoy an exceptional gastronomic experience, pleasant dancing, win valuable prizes in a raffle, and simply meet again after some time and spend a pleasant evening together.