World Hemophilia Day 2024 - Equitable Access for All

ČSH

On 17 April, the whole world once again turns red to mark World Hemophilia Day. Every year on this day, awareness of haemophilia, von Willebrand disease, and other bleeding disorders is raised in all countries. "Equitable access for all: recognising all bleeding disorders", regardless of the type of bleeding disorder, gender, age, or place of residence, is this year's motto of the World Federation of Hemophilia (WFH), on whose initiative World Hemophilia Day was established in 1989. Globally, more than 70% of people suffering from a bleeding disorder still lack access to treatment. That is why not only in less developed countries, but also here in the Czech Republic, it is important that we form a strong community. Only then can we credibly and effectively represent the interests of those who live with haemophilia or von Willebrand disease."

There is plenty to look forward to here at home as well. We are once again preparing the illumination of certain buildings, education campaigns in schools, press releases, media interviews, and more. Anyone among you can get involved. This year, a number of schools are joining in, which we are very pleased about. This is primarily thanks to you, our active members, as well as siblings -- simply those of you who live with haemophilia or von Willebrand disease, or encounter it in your surroundings. Thank you for your support.

Schools participating in World Hemophilia Day:

Fakultni zakladni skola Usti nad Labem, Ceskeho mladeze 230/2.
Gymnazium Usti nad Labem, Jatecni 243/22.
Zakladni skola Jana Amose Komenskeho Lysa nad Labem.
Zakladni skola Antonina Baraka Lovosice.
Zakladni skola Mikulcice.
Zakladni skola Bratri Vencliku, Praha 14.
Zakladni skola Usti nad Labem, Vinarska 1016/6.
Zakladni skola Usti nad Labem, Mirova 2734/4.
Zakladni skola Usti nad Labem, Palachova 400/37.

Landmarks/buildings that will be lit up in red:

The Petrin Lookout Tower and the building of the Faculty of Electrical Engineering of CTU in Prague.
Garlands in the streets of Brno (Ceska, Masarykova, Koblizna, Behounska, Stredova) and the building of the Moravian Provincial Archives in Brno.
The Town Hall tower and the Milos Sykora Bridge in Ostrava.
The Town Hall on the Upper Square in Olomouc.
The historic Town Hall building in Liberec.
The chateau in Brandys nad Labem.
The Marian Plague Column on the Square of the Czechoslovak Army in Jaromer.
The Church of the Assumption of the Virgin Mary and St. Wenceslas in Usti nad Labem.
Blanche flower shop in Usti nad Labem.

Both lists will be updated in the coming days with any additional participating institutions. We list those that have been confirmed.

Let's join Dan on his way to Mont Blanc.

July is fast approaching, and so is the time for preparation of twenty-three-year-old Daniel Simek. As the first Czech person with haemophilia, he will attempt to conquer the highest peak in the Alps -- Mont Blanc -- in July. To participate in the expedition, Dan needs to raise 4,000 euros; he is still about a quarter short. The money will go directly towards funding treatment for haemophilia patients in less developed countries as part of the Save One Life project. The director of this organisation is Chris Bombardier, a person with severe haemophilia who conquered the so-called Seven Summits (the Seven Summits is a collective term for the highest mountains on each of the seven continents), and who will lead the entire Mont Blanc expedition.

So far, Daniel's supporters have sent over 72,000 Czech crowns through the fundraiser, approximately 2,800 euros. He still needs 1,200 euros to reach his goal. Anyone wishing to support his efforts can send a contribution to the Czech Hemophilia Society's bank account, no. 2109200873/2700, with "Mont Blanc" in the message, or use the QR code available here.

Daniel will carry messages from other people with haemophilia -- members of the Czech Hemophilia Society and Hemojunior who support him on his journey -- to the summit of Mont Blanc. These messages can be sent by members of both patient organisations and other supporters via social media (hashtag #fandimdanovi) or the email addresses of both patient organisations. We will launch this call on the occasion of World Hemophilia Day, which falls on 17 April every year.

Follow our profiles on Instagram and Facebook. If you would like to share photos with us as part of World Hemophilia Day, do not forget to send them to us or tag us on your social media profiles.

#czechhemophiliasociety #hemojunior #bezstarostnespolu #fandimdanovi #WHD2024

We also remember people with von Willebrand disease.

You will be able to learn more about this condition and its treatment in an interview with Dr. Peter Salaj from the Institute of Haematology and Blood Transfusion (UHKT). Mrs. Jana Kalabova, who has a severe form of von Willebrand disease, shared her personal experience with this condition as part of the Liberate Life podcast. All of this will be available on 17 April on the new website www.willebrand.cz, partnered by Octapharma. The website will also feature a freely accessible questionnaire (VWDtest.com). It is intended as a tool for the general public suffering from increased bleeding or excessive bruising, to help evaluate symptoms and arrive at an approximate diagnosis.

VWDtest.com was developed by Dr. Fernando Corrales-Medina (Associate Professor in the Department of Pediatrics, University of Miami-Miller School of Medicine, USA), Professor Erik Berntorp (Professor of Clinical Coagulation Research, Lund University, Sweden), and their team of international bleeding disorder experts, to address questions about abnormal bleeding symptoms and von Willebrand disease (VWD).