News

Zubří in ancient Greek garb

On the last June evening of 2018, a total of 34 Greek citizens were invited to a great feast in Kalipolis, held in the presence of the ancient Olympic gods, and which marked the beginning of a two-week contest for the favour of Zeus, Hades, Poseidon, and the other Olympian gods. Yes, we are of course talking about the annual summer haemophilia camp, once again held in Zubří in the Vysočina region, which this year was thematically set in the spirit of ancient Greece.

A congress connecting science, medicine and a strong community of people with inherited bleeding disorders

New possibilities in haemophilia treatment offer hope for the future. Whether it is extended half-life products, non-factor replacement therapies, or gene therapy. These and many other topics were intensively discussed by the plenary of the World Federation of Hemophilia (WFH) at its traditional world congress, held at the end of May in Glasgow, Scotland. The five-day congress offered more than 5,000 participants a wide range of events, including several scientific sessions addressing topics that are currently shaping the "haemophilia" world.

Together This Time in Jihlava

Three editions of the traditional "Together about Haemophilia" meeting took place at one location, and then we began moving to a different venue each year. This time, we will meet on 14-16 September 2018 in Jihlava. We will be hosted by the local EA Business Hotel. Once again, we decided to dedicate an entire weekend to this event and give you the opportunity to spend more time together. The programme will be even more focused on so-called workshops, i.e. discussions on individual topics in smaller groups, allowing for mutual sharing of knowledge and experience.

Guidelines for Paramedics on Managing Emergencies in People with Bleeding Disorders

The effort to improve the approach of emergency medicine to people with hemophilia and von Willebrand disease has moved one step closer to fulfilment. In collaboration with hematologists, we have developed a binding guideline for paramedics and emergency departments on how to approach people with congenital bleeding disorders. The document also includes examples of common and life-threatening bleeds, a list of hemophilia treatment centres, descriptions of identification devices, and information about people with hemophilia who have inhibitors. You can review the document here.

The Last Time in Vísky?

During the week of 11–19 May, another edition of the rehabilitation retreat for adult hemophilia patients took place. Most likely for the last time in a while at the Ohrada guesthouse in Vísky near Letovice. While the guesthouse meets practically all our requirements for holding this retreat, the general consensus is that it is time for a change. We are currently searching intensively for a suitable location and for now it looks like next year we will head to the Orlické hory mountains. Jarek Trefil shared his impressions from the retreat. We thank Jarek and look forward to further gatherings with everyone. On behalf of the organisers, Michal Skořepa.

Minutes of the CSH Council Session 11. 5. - 12. 5. 2018

Minutes of the CSH Council session on 11 and 12 May 2018 in Vísky. Present: Martin Bohůn, Jana Kalábová, Martin Žídek, Michal Skořepa, Lukáš Koblasa. Hemojunior Chairman Michael Bereň was invited by the CSH Council for part of the session.

The Regional Workshop Project Reports Another First

It started first on Saturday 14 April with a rehabilitation-themed seminar in Plzeň, and three days later, on World Hemophilia Day, we continued in Hradec Králové. At the close of April, which has traditionally belonged to hemophilia patients, we would like to look back on these two workshops. And with whom else but the participants themselves? Two of them shared their impressions with us, and we present their observations in the following lines.

We Love Science

Saturday 14 April was a much-anticipated day for members of the Society and Hemojunior. Even though the beautiful spring weather encouraged outdoor activities, the attractions of Techmania in Plzen proved irresistible for about 150 of our members. They once again came to celebrate the day that belongs to haemophilia patients worldwide -- 17 April. All this was traditionally made possible with the very generous support and cooperation of Novo Nordisk. Truly extraordinary experiences awaited at Techmania itself.

Sharing Knowledge and Experience Makes Us Stronger

World Hemophilia Day has been commemorated every year since 1989 on 17 April -- the birthday of Frank Schnabel, founder of the World Federation of Hemophilia (WFH). Frank Schnabel (himself a person with haemophilia) founded it in 1963 at a meeting of representatives of six national haemophilia societies in Copenhagen. World Hemophilia Day provides haemophilia families and their loved ones with an opportunity to introduce the public to this disease, its challenges, and to share experiences with friends, colleagues, healthcare workers, neighbours, and others, and to find understanding and support. During World Hemophilia Day, people showing solidarity with haemophilia patients wear the colour red, and WFH member organisations join the global "Light It Up Red" project. Red is the symbol of this blood disorder.