News

Podcast with Vojtěch Horník

Hemophilia is an integral part of Vojtěch Horník's life, but he does not see it as an obstacle to achieving his personal or professional dreams. And as he says himself, the disease gave him the opportunity to get involved in activities and meet people he would never have known without it.

Identification Items for People with Bleeding Disorders

One of the main tasks of the association was to develop standardized emergency medicine procedures for hemophilia and other bleeding disorders and proposals for corresponding identification items. We have fulfilled these requirements. The Czech Hemophilia Society and Hemojunior, in cooperation with the Emergency Medical Service, have prepared a set of special identification items for all individuals with blood clotting disorders that can save lives.

Podcast with Martin Bohůn

What is the key to a fulfilling life with this rare disease? "It is important to accept it as part of your life, consistently follow your treatment, and have someone to turn to for help and support," says the chairman of the Czech Hemophilia Society and guest of the third episode of the podcast Na vlastní žíly, Martin Bohůn. He discussed his personal experience with the disease and his work for the hemophilia community with the show's host Michal Bereň.

Podcast with MUDr. Ester Zápotocká

While Czech hemophilia patients have access to the latest treatment products, globally only one in ten hemophilia patients is properly treated. "In this regard, we live in a very exceptional country," praises the availability of the most modern treatment in the Czech Republic paediatric haematologist MUDr. Ester Zápotocká, who was the guest of the second episode of the podcast Na vlastní žíly. The show's host Michal Bereň talked to her not only about the therapy of this rare bleeding disorder.

Red Once Again Illuminated April 17

On behalf of the Czech Hemophilia Society and Hemojunior and all people living with haemophilia or von Willebrand disease, we thank our partners and institutions who showed their support by lighting red lights on April 17, World Haemophilia Day. We appreciate your support! Photographer: Ondrej Hajek

Impact of the COVID-19 Pandemic on People with Hemophilia and von Willebrand Disease

The opinions and needs of our members are important to us, which is why we created an online questionnaire on the topic of the Impact of the Pandemic on the Community of People with Hemophilia and von Willebrand Disease, in collaboration with clinical psychologist Mgr. Petra Buckova. The questionnaire was distributed in December 2020 and was completed by 81 respondents. The aim was to obtain information on whether members would appreciate more intensive targeted support and assistance. We are publishing the survey results on the occasion of World Hemophilia Day, which is commemorated annually on 17 April.

World Hemophilia Day 2021 in the Virtual World

Dear friends, in just a few days we will again celebrate World Hemophilia Day. Every year on 17 April, we use this occasion to raise awareness of haemophilia and von Willebrand disease among the general public. This year, the situation once again does not allow us to celebrate the day with an in-person gathering. As last year, we would like to invite you to join the celebrations at least in the online space. Send us your photo by Saturday showing how you celebrate this day with the characteristic red colour. We will again publish your photos throughout Saturday on our Facebook page. We place no limits on your imagination and creativity!

Recommendations of the Czech National Hemophilia Program (CNHP) on Vaccination Against SARS-CoV-2

Recommendations on vaccination against SARS-CoV-2 (COVID-19) were published earlier this year in the journal Haemophilia, and a brief translation is available on our website at [this link](/novinky/prohlaseni-k-ockovani-proti-pandemii). The recommendations are endorsed by the World Federation of Hemophilia (WFH), the European Association for Haemophilia and Allied Disorders (EAHAD), the European Haemophilia Consortium (EHC), and the National Hemophilia Foundation of the United States (NHF). These recommendations, including their Czech translation, already contain all the essential information.

Podcast with Hemojunior Chairwoman Kateřina Altmanová

A healthy person has a hundred little men in their blood who rush to a wound to seal it, while a hemophilia patient has only one such little man. This is how simply the chairwoman of Hemojunior, Kateřina Altmanová, explains the concept of hemophilia to the youngest children. She is the first guest of our new podcast Na vlastní žíly. Its host is hemophilia patient and former Hemojunior chairman Michael Bereň, who invites interesting personalities from the field of hemophilia to the microphone to discuss important and unusual topics related to this disease.