News

Minutes of CSH Council Meeting, 9 December 2017

Minutes of the CSH Council meeting on 9 December 2017 in Brno. Representatives of the newly elected CSH Council met for their first joint session. The Council was convened by Martin Bohůn. Present: Martin Bohůn, Jana Kalábová, Michal Skořepa, Lukáš Koblasa, Tereza Koblasová. Excused: Martin Žídek. Start: 11:00; End: 17:00.

Prague Was Honoured to Host a Symposium on Von Willebrand Disease

Von Willebrand disease is the most common bleeding disorder, yet unlike hemophilia it is often overlooked and frequently diagnosed late and incorrectly. People around the world suffer from this disease, and representatives from around the world gathered in Prague on Friday 1 December and Saturday 2 December 2017 to exchange information and experiences, both professional and personal. The symposium was organized by the World Federation of Hemophilia (WFH), which, like other hemophilia organizations around the world, represents all patients with blood clotting disorders, and the pharmaceutical company SHIRE, which among other things develops therapeutic products for rare diseases, including von Willebrand disease.

Haemophilia Was the Topic in Hradec

'Hello, I am a carrier and my brother Lukas has haemophilia...' That is roughly how the event began on Saturday 2 December at the NaPLAVKA cafe & music bar in Hradec Kralove. It was not a meeting of an anonymous alcoholics' club, but a gathering on the topic of haemophilia. Since this rare disease causes bewilderment in our parts, we wanted to dispel certain misconceptions -- for example, what kind of pressure is placed on carriers when they decide to start a family, what it is like to give birth to a child with haemophilia, what it is like for children with haemophilia to grow up, and how the choice of education, hobbies, career, and partners is affected.

The 3rd Gala Evening Is Here for You

Dear friends and members, allow us to invite you on behalf of both organizations to the 3rd Gala Evening of the Czech Hemophilia Society and Hemojunior, which will take place on Saturday, January 27, 2018, at the Alcron Radisson Blu Hotel in Prague. The programme begins at 17:45, with admission to the hall from 17:00. The Wocaties band will play for dancing and listening. The programme will naturally include the popular raffle, and haemophilia patient Patrik Zmij will perform an exclusive guitar solo. Refreshments will be provided in the form of a buffet, and guests will receive beer, wine, and soft drinks free of charge.

Do You Know What Haemophilia Is? Siblings Will Give You a Hint.

When a person with haemophilia is injured, they do not bleed faster or more than healthy people -- the difference is that they bleed longer. Small cuts or superficial bruises are usually not the main concern, but larger injuries and traumas mean more serious bleeding. This is the definition that most clearly describes this condition. But when you ask people on the street, most cannot imagine anything at all. Siblings Tereza and Lukas Koblasovi, both members of our Society, decided on their own initiative to raise public awareness of this rare disease by hosting a joint talk on Saturday 2 December 2017 from 5:00 to 10:00 PM at NaPLAVKA cafe & music bar in Hradec Kralove. The head of the local haemophilia treatment centre, Doc. MUDr. Petr Dulicek, has also confirmed his attendance.

Regional Workshop Heads to Brno for the Second Time

In cooperation with the haemophilia centre at Brno University Hospital and the company Shire, we are preparing the 2nd regional meeting of colleagues in the South Moravian Region. The first meeting took place in Brno as early as 2011, and now we would like to follow up. Our aim is to help all haemophilia patients, their family members, and partners in managing the disease.

You Can Never Have Enough Information

Over the past five years, autumn has become a time when hemophilia patients of all age groups share moments together at the traditional intergenerational meeting. This year was no exception. The second October weekend brought all participants together in the largest conference space at the Top Hotel in Prague. For young and old alike, it was an adventure navigating the local labyrinth of corridors. No one got lost, however, and nearly one hundred and fifty participants could enjoy shared moments with friends and renowned experts.

Suggestions for Emergency Services

We have long known that the situation regarding contact with emergency medical services and hospital emergency departments has major weaknesses. On the initiative of the Czech Hemophilia Society, which has a great interest in ensuring that these institutions function properly in case of need, a seminar was held today in the Chamber of Deputies that should greatly help the situation. The conclusions are important for everyone.

Invitation to the CSH Conference

Dear members of the Czech Hemophilia Society, we cordially invite you to the annual election Conference of the Society. It will take place on 14 October after the conclusion of the professional programme of the "TOGETHER ABOUT HEMOPHILIA" meeting at the Top Hotel, Blažimská 4, 149 00 Prague 4 - Chodov. We expect the start at 4:00 PM.