News: světový den hemofilie

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

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!

The Whole Family Exercises

Join us. We start on April 1, 2021!

Prague Will Light the Petřín Lookout Tower in Red

Every year on 17 April we observe World Hemophilia Day to raise awareness about hemophilia, von Willebrand disease, and other blood clotting disorders. This is its main purpose, because with increased awareness comes better diagnosis and access to treatment for thousands of people. The motto of this year's World Hemophilia Day is "Get + involved." Whether you are hemophilia patients yourselves, affected by von Willebrand disease, family members, a corporate partner, volunteer, or anyone who sympathizes with our Society, we want to encourage you to help raise awareness about the disease.

Once Up, Once Down (Below)

On the last Saturday of April, it was time to descend into the depths of the Anselm mine at Landek Park in Ostrava-Petřkovice. Landek is a hill in Ostrava, and not just any hill. It is a world-renowned locality in terms of geology, archaeology, history, natural science, and mining. From early morning it was clear that something was being prepared in the local compressor hall. From almost every corner of the country, participants dressed in red gradually began to arrive to share a day full of discovery and fun. All of this in connection with World Haemophilia Day, which we commemorate every year on 17 April. The majority were naturally local members of the Czech Hemophilia Society and Hemojunior — those from Ostrava, including the physician and nurse from the Ostrava haemophilia centre.

We Observe World Hemophilia Day

World Hemophilia Day falls on 17 April and its main goal is to raise public awareness about hemophilia and other related blood clotting disorders and to gain attention and understanding for them. Thanks to the efforts of patient organizations from around the world, access to care is gradually improving even for those who still remain without treatment. Its history dates back to 1989 and the World Federation of Hemophilia (WFH) chose 17 April in honour of the birthday of its founder Frank Schnabel. The WFH was founded in 1963 and is headquartered in Montreal, Canada, currently registering 140 member countries across all continents.

Hemophilia patients head to Landek...

...or World Hemophilia Day celebrations in Ostrava on 27 April 2019. We have decided to invite members of both organizations to Landek Park in Ostrava, where we will once again commemorate the day dedicated to hemophilia patients around the world. On 17 April 2019, it will be thirty years since the World Federation of Hemophilia, in honor of the birth of Frank Schnabel, its founder, designated this date as World Hemophilia Day. During this period, the whole world dresses in red, prominent buildings in world capitals are illuminated, and various happenings, press conferences, and social gatherings of those connected with hemophilia take place. The Czech Republic is not lagging behind in this regard.

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.

Jubilee Celebration

Science shows, brain teasers, experiment demonstrations, classic and interactive exhibitions, unexpected experiments, unconventional workshops, and on top of that a super-modern planetarium at the Techmania Science Centre in Plzeň. This is how the website of the city of Plzeň describes the venue we have chosen for this year's World Haemophilia Day celebration, which falls on 17 April every year. We will celebrate it together for the tenth time, this year slightly in advance, on Saturday, 14 April 2018. Since the exhibitions are fully covered, we do not need to worry about bad weather.

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.

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.

Nobody Got Lost. Hopefully.

Loučeň Chateau near Nymburk was truly buzzing on Saturday. Nearly 160 participants came to enjoy not only the atmosphere of the chateau grounds, knights' tales, the Kašpárek and witch puppet show, or broomstick flying lessons performed by witches Gertrůda and Ethel, but mainly to meet friends once again after a year and commemorate World Hemophilia Day. Thank goodness the meteorologists were wrong this time — despite a slight cooling, we spent most of the day in the adjacent chateau park.

For the Eighth Time, and Different Again

We are talking about the celebrations of World Haemophilia Day, which falls on 17 April every year and is commemorated by the haemophilia community worldwide. From the early medieval experience at the Zeměráj adventure park, our steps will lead us further north, and the next stop will be the Baroque Loučeň Castle in the Nymburk district. One of the few available dates was Saturday, 23 April, and so on that day the castle will belong not only to the members of the Czech Hemophilia Society and Hemojunior, but also to their loved ones.

Through Paradise, Preferably Barefoot

The highlight of the World Hemophilia Day celebrations was undoubtedly the gathering of Czech Hemophilia Society and Hemojunior members at the Zeměráj adventure park. The medieval village near the Orlice Dam came alive on the last Saturday of April with more than one hundred and fifty participants, who enjoyed a number of extraordinary experiences across the nine-hectare grounds. Not only children could try making fabric from wool and linen, spin a potter's wheel, or learn how people slept in 12th-century huts. At the archaeological site, we sifted through sand to find pottery shards, bones, coins, jewellery, and necklace beads, and could keep some as souvenirs.

Off to Zeměráj

Who would not want to spend lovely moments in a paradise where the diversity and beauty of Czech nature and history come together, where you can experience things not only through sight and hearing but also through your bare feet, hands, nose and taste! That is what this year's World Haemophilia Day promises. Come and try various games, puzzles, adventure tasks, or simply sit back and meet new and old friends in a realistically recreated setting of an early medieval village.

A Train Robbery with a Happy Ending

The end of April has traditionally been dedicated to World Hemophilia Day celebrations. This year, the celebrations took place on a larger scale than usual, as they were launched with a charity event in Prague held on 17 April itself. We have already reported on how it went, and you can recall it here. The second part of the celebrations then took place on Saturday 26 April, naturally with members of both the Czech Hemophilia Society and Hemojunior in attendance. Since some members of one or the other organization were apparently prevented from attending due to serious reasons (how else to explain someone voluntarily missing out on this exceptionally successful celebration), we bring you a brief report on how it went.

April Full of Celebrations

World Hemophilia Day celebrations are approaching -- here is more detailed information. On the actual day, Thursday 17 April, a procession raising awareness about hemophilia will pass through part of Prague. It will start from Palackeho namesti at 4:00 PM, where you will find a clearly red and highly visible stand. The procession, led by ambassador Jana Dolezelova, should last approximately 50 minutes, culminating at the fountain on Namesti Kinskych in Smichov.

Full Steam Ahead

After successful events with go-karts, in a western town, a medieval fortress, or a cruise on the Bata Canal, this time we will take to the railway tracks and celebrate World Hemophilia Day together. The format will be similar to last year's "nautical" theme, only the navy blue will be replaced with railway colours. The programme, good food, and drinks will remain, but in a different setting.

The Society Safely Back in Harbour

It navigated the challenges of the Bata Canal connected to the Morava River and, after several kilometres, returned to the harbour in Veseli nad Moravou. Not the entire Society, but those members and guests who came to celebrate this year's World Hemophilia Day. The actual date is in April, but since it can be windy on the water, the Society Council decided to postpone D-Day to May. It paid off -- the weather was very generous and after a long, persistent winter, it showed a friendly face to both sailors and passengers.

World Hemophilia Day? This Time, Sailor Style.

It is celebrated all over the world every 17 April. This time, however, we are postponing it slightly and waiting for better weather. We will be sailing on the Bata Canal.

World Hemophilia Day Celebrations With Extraordinary Success

The fact that people with hemophilia gather around the world every year around 17 April is a long-standing tradition. However, the Czech Hemophilia Society, its sister organisation Hemojunior, with the support of pharmaceutical company Novo Nordisk, really hit the mark this time. A gathering was prepared for members and supporters on Saturday, 14 April, at the medieval Fortress Hummer near Prague.

Let's Celebrate World Hemophilia Day Together

Just like around the world, it has become a tradition here too. Following a series of successful previous gatherings, this time we invite you to the Hummer Fortress and Hummer Centre. The World Federation of Hemophilia has set the date as 17 April and recommends that celebrations take place around this day. The nearest weekend is the one before, so the big day for all members of the Czech Hemophilia Society and Hemojunior falls on Saturday, 14 April. More details in the attached invitation.

Photo Gallery: Hemophilia Day – Western Town Boskovice

Photo gallery from the World Hemophilia Day 2011 celebrations at the Western Town in Boskovice.

Photo Gallery: Hemophilia Day – A Day at Prague Zoo

Photo gallery from the World Hemophilia Day 2010 celebrations – a day at Prague Zoo, where Novo Nordisk invited members of the Czech Hemophilia Society and Hemojunior.

Photo Gallery: Hemophilia Day – A Day with Go-Karts

Photo gallery from the World Hemophilia Day 2009 celebrations – an afternoon of go-karting organized in cooperation with the CSH Council and sponsored by Bayer-Schering.