On Saturday, May 16th, we once again celebrate the HAE Day. This international event raises awareness about the rare disease known as hereditary angioedema (HAE). This year, we are focusing on two key factors that positively impact the quality of life of HAE juniors: mental resilience and physical activity. We believe that true inner strength and the courage to face a rare disease stem from mutual community support, the courage to confront one's own fears and anxieties, and the joy of movement.
Our motto for this year, "Stronger Than HAE Through Sports", isn't just about kilometers or new records. Regular exercise is a way to maintain both a healthy body and a clear mind. Endorphins and the joy of pushing one's limits are natural antidotes to the stress and anxiety that come with living with this diagnosis. Most HAE patients can engage in sports if they exercise sufficient caution. Take a look at how we are supporting them this year.
We confirmed that sport strengthens the mental well-being of children and adolescents with HAE at our 6th Family Camp in the Vysočina region of the Czech Republic. While the juniors competed for trophies in the HAEro Games, adults shared their experiences—a powerful source of motivation and inspiration for the entire family. The evening creation of the "Vision Board" was a beautiful highlight. Children and parents alike combined their sporting visions with the belief that HAE need not stand in the way of fulfilling their dreams.
We were so inspired by these creative pieces that we plan to include them in future awareness projects of our patient organization, such as art exhibitions, calendars, or other materials that help spread awareness about life with HAE.
Closely linked to our sports theme is the global #active4HAE campaign, which launched on April 1st and runs until the end of May. You still have two weeks to join us in this international initiative in spreading HAE awareness!
Participation is simple:
Every movement counts and helps spread awareness of hereditary angioedema in the Czech Republic and around the world. You can look forward to more sports-related activities for HAE juniors throughout the year.
The whole world is joining in on the challenge. See more photos at https://haeday.org/gallery.
To mark HAE Day, we are also re-emphasizing the sensitive topic of mental health. Living in constant anticipation of the next attack is exhausting and can be a source of anxiety or isolation for children and teens.
To help our juniors and their families manage these situations better, we have published the HAE and Anxiety guide (only in Czech). It offers fundamental support for managing anxiety, advice on confronting negative thoughts, and recommendations on when and where to seek professional help. The material is introduced by an allegorical story of a girl and two wolves: the Wolf of Anxiety and the Wolf of Courage. It all depends on which one we choose to feed.
To ensure these useful tips reach everyone who needs them, we are launching an awareness campaign on our social media channels specifically for International HAE Day. We will gradually walk you through key topics from the guide, from identifying triggers to self-help techniques. Follow us on Facebook and Instagram under #HAEaUzkost.
We would like to extend our heartfelt tHAEnks to all donors, partners, and supporters of our organization. Without your help, we would not be able to realize these activities. You help us spread awareness about the rare disease HAE and our patient organization, HAE Junior!
You can send your financial donation also to our bank account 2001782429/2010.
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