World Hemophilia Day 2021 in the Virtual World

ČSH

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!

We would still like to greet you in person. On Saturday 17 April at 1 pm, we are therefore planning a short online meeting -- wearing a red t-shirt, a scarf, a wristband, etc. -- and perhaps with a glass of red wine, with which we will "clink" together and toast to health. During this meeting, Mgr. Petra Buckova will also share the conclusions she drew from a large survey on the psychological coping of people with haemophilia during the pandemic, which we asked you to fill in some time ago. If you wish to participate in the meeting, please fill in the registration form at https://forms.gle/1X3R9ToDvHiYaMwv7

As part of the celebrations, we will again participate in the illumination of certain prominent buildings. On Saturday evening, the following should be bathed in red:

Petrin Lookout Tower
Ministry of Health of the Czech Republic
Ministry of Finance of the Czech Republic
The Dancing House
The building of the Faculty of Electrical Engineering of CTU in Prague
The balcony of the Mahen Theatre in Brno

Since 1 April, the project called "The Whole Family Exercises" has been running. In cooperation with our trusted physiotherapist Mgr. Marie Katzerova, we have prepared a series of specific exercise sessions that you may not have encountered before. Of course, the exercises cannot be tailored to every individual person with haemophilia or von Willebrand disease. However, in each session you will find exercises that absolutely anyone can manage, and they may open up new possibilities for movement and activity. Exercise at home, with the whole family, with us, in connection with the entire haemophilia world. The exercise programme culminates on 16 April; more information is available at: https://cvicimeshemofilii.amepra.cz/

We would also like to point out that on our YouTube channel you can find recordings of all online meetings that we have organised since the beginning of the year in cooperation with Hemojunior. You can watch the videos at https://youtube.com/channel/UCxoHm8dzqmICrhSXXR29nbQ

Another important piece of news that should not escape your attention is the COVID-19 vaccination recommendation issued by the Czech National Haemophilia Programme. This recommendation supplements the information we previously provided in a more general form as a translation of the recommendation from the World Federation of Hemophilia. The latest CNHP recommendation can be found in the article https://hemofilici.cz/index.php/cs/doplnkove-informace/rady-lecba/407-doporuceni-cnhp-k-ockovani-proti-sars-cov-2-viru

We will keep you informed about further activities related to World Hemophilia Day -- follow our website and Facebook page at https://www.facebook.com/hemofilici.

It will be our pleasure to be with you in the coming days, and not just in the colour red.