Access for All - World Hemophilia Day 2022

After Maundy Thursday, Good Friday, and Holy Saturday, under normal circumstances we would have wrapped this Sunday in red. As is our tradition, in support of all hemophilia patients, those with von Willebrand disease, and their loved ones. Not only the Petřín Lookout Tower, the Mahen Theatre, and Ostrava's New Town Hall could have been bathed in our colours this year. With the hope and help of several of you, members of the Czech Hemophilia Society and Hemojunior, we were managing to spread the red to other cities and the illumination of new buildings was being negotiated. However, events after 24 February changed the situation. The Society and Hemojunior therefore decided that this year the landmarks of Czech cities will remain unlit. As an expression of solidarity with refugees from the war in Ukraine, only Prague will illuminate Petřín in white. The Society consulted this decision with all the institutions involved, hoping that we want to continue the tradition in the coming year, which was promised to us by all of them.

Nevertheless, a number of other activities related to World Hemophilia Day are already underway. We began awareness-raising about the activities of both organizations this week with our donors. An interview about hemophilia on iprima.cz is being prepared; the results of the European Haemophilia Consortium (EHC) survey, in which many of you participated, will be presented through a press release. The same goes for the next instalment of the new Medicomics, which will see the light of day in these days. This time it focuses on travel for hemophilia patients and people with von Willebrand disease. Therefore, the media will also feature experiences of two of our hemophilia patients who travelled abroad not only for discovery but also for study or work. We will meet some of you as early as Saturday 23 April at Prague Zoo, thanks to the Feed the Panda project www.nakrmpandu.cz. As a bonus, we have decided to adopt a red panda. All children from Hemojunior and the Czech Hemophilia Society are therefore adoptive parents of a red panda at Prague Zoo for this year.

And how can we all celebrate 17 April, from a distance? Perhaps again through social media. Let us traditionally show our strength and togetherness, that we think of each other on this day, that this day is important to us. Just share (tag us) on our Facebook profiles an Easter photo, perhaps with a message or a wish for all hemophilia patients, those with von Willebrand disease - simply our hemophilia community. There are no limits to your ideas. The Easter holidays can also help us with this. If you do not have a social media profile, send us your photo or message to info@hemofilici.cz or info@hemojunior.cz and we will take care of publishing it.

The motto of this year's Hemophilia Day is: Access for All. The EHC is preparing a series of videos dealing with the problems of hemophilia community members who are trying to obtain adequate treatment and diagnosis, such as people with inhibitors, women with bleeding disorders, people with von Willebrand disease, etc. To this end, every day from 17 to 22 April 2022, the EHC will publish an educational video on its website and social media that will address one of the above topics.

Happy Easter. And when you have time and a moment just for yourself, we wish you that very much.

We look forward to the upcoming events we are preparing for you. More on our website in the events section. You can still register for the intergenerational meeting, the rehabilitation retreat for adults, or the summer hemophilia camp. Do not hesitate, places are filling up and are limited!